Posts: 1,445
4/20/10 2:22 P

Cindy, most people who have been gluten free, then eat gluten have uch worse reactions than before. The time frame they've quoted you is suspiscious. Most recommend medical references/researchers say 6 weeks, not 2 weeks. The tax deduction is only the difference between the cost of a similar item and you must keep all receipts. Plus it is dependent on a formula based on your income. Most people find it very time consuming with little benefit. Some do it. You need to research it more.
Check our sticky topics. We have a wealth of information in them as I've repeatd many times in intros.
good luck, Barb (gd 29 yrs)

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4/20/10 9:59 A

Hi everyone,
I'm new to this team and have been having my own battles with gluten. I am so happy that I found this team to learn and better understand what I know to be my problem. I met with a consultant who told me that my issue was with gluten. She told me to remove it from my diet and to add some enzymes and probiotics and a good vitamin. Within a week I felt on top of the world. I could move when I wanted to and had more energy than I can remember having in years. I saw my Doctor and he agreed that gluten or wheat (not sure which) was my problem. But I am on a fixed income for a while as I try to get a business up and running and the gluten free food is so much more expensive. I found that if you have CD you can get a tax deduction for the difference in the cost for food but I would need a formal diagnosis.
I was set up with a gastroenterologist and they scheduled me for a biopsy on April 29th, but told me that I would have to eat wheat and other gluten products for the 2 weeks leading up to the test. Within 3 hours of consuming a small amount of wheat I had a severe asthma attack and every joint in my body ached. I felt like I was hit with a bus.
I know that I only have to go through this for 10 more days but everyday feels like a year.
I was wondering if anyone else went ahead with the tests after being gluten free for a while and if they too had a violent reaction like this.

Posts: 1,445
3/25/10 11:38 P

Welcome and how lucky are you with a doctor that you love and listens to you. Itchy skin is oversimplifying it. There can be DH (Dermatis Hermetiformis), psoraisis or excema or just an allergy. DH is always distributed evenly on both sides with small bumps. check the university of Chicago's site or Celiac.com or www.glutensensitivity.net for the gluten grains primer

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3/25/10 7:32 A

Let me just say I love my doctor! I love how she listens, how she researches and doesn't make me feel like I'm insane.

I have PCOS, hypothyroidism, depression, dairy intolerance (though I eat it anyway) and my digestive track has been wacky since I was a toddler. I'm now 40 and my new doctor finally brings up celiac disease. I've been researching it for the past week and it's all starting to make sense. The doctor did run some labs so we'll see what that says. And, she suggested trying to go gluten free once the test results are back. I guess I need to keep eating them until testing is over.

And, is it true...CD can cause your skin to itch? I read that in several places. I always have itchy skin...and so does my 7 year old (she has for years).

I'll definitely be hanging out here quite a bit!

Edited by: MRSDD94 at: 3/25/2010 (07:34)

Posts: 1,445
3/10/10 1:55 P

good luck! Talking from experience, you will not know how well you can be until you manage to be 100% gluten free. It is hard to change the mindset and the cravings until you see gluten as a poison. all the best to you.

Edited by: GFNOMAD at: 3/10/2010 (13:59)

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3/10/10 1:43 P

I have hypothyroid, hashis and gluten intolerance. I try and live as gluten free as possible. I also and lactose intolerant. Fun city. I have also heard they go hand in hand. I do know, had I been properly diagnosed in 2007, I would not have had to have half my large intestines removed. I probably would not have had to have the gastric bypass in 1999 had I been diagnosed back then with thyroid and gluten intolerance. It took till last year when I went to a new doctor and he took all the right tests. Now I am feeling better and able to start exercising again and eating right. I just hope it does not take 10 years to fix what it took 10years to get diagnosed with.

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3/1/10 9:42 P

PAMWEED, how's it going?

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1/4/10 10:47 A

Wasn't sure which topic to post under, but I figured this would be a good place to start. I do not have CD, but several of my friends do, and I always like to be up to date on medical/health/food issues, especially since I love to cook and I want to be able to have my company eat the foods I prepare, so I go out of my way to do research and make sure there's no cross contamination and the food is prepared appropriately.

My husband has a lot of medical issues, including anxiety and depression as well as GI issues that have never been resolved. Because of the latter, I have been encouraging him to go GF, even though he gains weight rather than loses. Research he's been doing shows that depression and anxiety can be linked to gluten. That pretty much convinced him he should try GF.

Because I'm the cook in the house, I was willing to try it with him (I love challenges!). I have hypothyroidism, so I am aware gluten/celiacs can be related. My issue typically is fatigue and constipation. I was going to get tested, but because I'd been gluten free for more than a month, I knew it was pointless. The one time we let things slide and had pasta for dinner with friends, both of us suffered immensely. That convinced my husband he needed to stick to the diet more closely. He doesn't always realize what foods contain gluten so he relies on me to keep him on track.

I read cookbooks like most people read novels, so it's been very enlightening. I've been part of SP for a couple of years now, but without any real success because I just don't always have the time to post my foods and exercise, let alone participate in teams and blogs. I've had a severe lack of energy and motivation in recent months, and I need to get back on track. I love to cook, and I love breads and pastas and beer, so I am learning to redirect and make adjustments. Thankfully my family is willing to work with my experiments. Our grown daughters who still live with us eat the food I prepare, but they know they can get the "real" stuff elsewhere if they get desperate!

I look forward to checking out the recipes for GF to add to my current collection. I cook from scratch and never (ok, rarely) from packages. One thing I know--it is expensive! But, as I know from my friends' experiences, health is a precious commodity at any price!

I am especially interested in learning how to keep the GF breads and pastas in my diet but still lose weight. I know, I know--more fruits & veggies. If it were that easy!

I look forward to reading everyone's blogs and posts and recipes and sharing the experience. Even though I don't have CD, I can and do relate and sympathize. Thanks for letting me share (got longer than I expected) and for providing this Team!

Posts: 508
11/19/09 2:12 P

There seems to be a number of research articles coming out that connect Hashimotos/ autoimmune thyroid disease to gluten intolerance or Celiac disease.

I first stumbled upon this while reading "Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism" by Datis Kharrazian.

In the book he cites several studies:

Thyroid-related autoantibodies and celiac disease: a role for a gluten-free diet?http://www.ncbi.nlm.nih.gov/pubmed/12192201?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study.
http://www.ncbi.nlm.nih.gov/pubmed/11280546?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=2&log$=relatedarticles&logdbfrom=pubmed

Autoimmune thyroid diseases and coeliac disease.
http://www.ncbi.nlm.nih.gov/pubmed/9872614?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

Celiac disease and autoimmune thyroid disease.
http://www.ncbi.nlm.nih.gov/pubmed/18056028?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=18

and about 20+ more... And I've found more online as well... there are 101 articles on Pub Med alone.

Markers of potential coeliac disease in patients with
Hashimoto’s thyroiditis
http://www.eje-online.org/cgi/reprint/146/4/479

Gluten-dependent diabetes-related and thyroid-related autoantibodies in patients with celiac disease.
http://www.ncbi.nlm.nih.gov/pubmed/10931424?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed

So my question is- has anyone here been diagnosed with Hashi's AND Celiac or gluten intolerance? Is anyone with a thyroid condition following a gluten free diet and how has it effected you?

I look forward to hearing from you on this...
THanks! Mindy

Posts: 4
11/10/09 11:48 P

I was diagnosed with CD via endoscopy biopsy in June 2006. I was so happy to have been diagnosed with ANYTHING as I had been sick since Oct 2003 with a "mystery" illness. I had seen every specialist in the book and went through several diagnoses before a correct diagnosis of CD was given. I was even on Prednisone for 12 months to treat the symptoms. I have stuggled with living the GF lifestyle as no one in my family follows GF. And there is a SEVERE lack of good and economical GF alternatives in my area. But Today marks DAY #4 of 100% GF! I am treating this a a type of REHAB for me. Gluten has become my "drug" of choice! And when I am stressed I crave gluten rich foods. But I feel so great that I can not go back to living any other way besides GF!!! I also have DH but it is under control and very asymptomatic when I adhere to the GF life!!! Here's to the beginning of my new adventure into health!!!

Posts: 1,445
11/5/09 11:32 P

If you have DH, then you are essentially a celiac. It affects your skin instead of your gut. A gluten free diet is the solution.
Only 15% of gluten syndrome as they are beginning to call it now is celiac. Celias has a specific definition in that the villi of the small intesntine are destroyed ie blunted by the gliadin protein. That results in a host of other problems. All very complicated and too much for me to write here.
check out www.glutensensitivity.net

Edited by: GFNOMAD at: 11/5/2009 (23:34)

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11/5/09 1:09 P

I had a stool test and a blood test done. My blood test came back negative for celiac, but the stool test came back positive for gluten intolerence. So it seemed to me that i dont have celiac, but am gluten intolerant. I'm not sure about the skin test...never got it done. but the blood test shows celiac ONLY...not if your gluten intolerant. good luck!! and I'd say even if the tests don't show anything for gluten intolerance or celiac, keep doing what your doing because it seems to be working. I don't get a reaction everytime I eat gluten...im actually still struggling with NOT eating gluten...but every few months i get a horrible stomach pain. So i say do what works for you

Posts: 23
8/6/09 7:22 P

I'm new to this group and I'm looking for information to help me figure this thing out. I have been trying to stay away from gluten since June. I don't think I have Celiac's Disease even though I have had some intestinal issues. My problem is this rash or these rashes. I've had this rash on my forearms for 18 months and was looking at rash pictures on the internet trying to figure out what it is. I've tried all kinds of over the counter creams and such and nothing has worked. But while trying to find out about that rash I came across a picture that looked like this other rash I have been getting on my lower back over over 30 years. So I looked it up and found out it was DH and the description fit my rash exactly. So I quit eating wheat imediately. After awhile the rash on my forehead went away, the rash on my back went away (although it has done that in the past) and the rash on my arms started to get better. Also, my eye stopped hurting and what I thought were blood sugar drops stopped.
I quess I'm alittle different in that I like the GF breads for the most part. Some are better than others. I use to eat high protein, high fiber, low sugar whole grain cereal for breakfast during the week and would have what I thought were sudden drops in my blood sugar an hour or 2 after and would have to eat something to stop it. I was hungry all the time and had chocolate cravings all the time too. I was eating every couple of hours to try to not have the "blood sugar drops" but since going GF I haven't had that reaction and I've gone 6+ hours without eating. The GF bread fills me up better than wheat bread.
Other symptoms I had got better; things I didn't think we're related to the rash or would have imagined would change as a result of being gluten free.
I have an appointment to have an allergy test done this month. I'm not sure what kind of a test but I think a skin prick test.

Does anyone know how accurate they are? Should I also have a blood test? Should I load up on wheat before I get tested?

I'm sure I have eaten wheat since trying to get gluten free because I eat out so much. I've noticed that when I do eat wheat my eye starts hurting, the ringing in my ear gets worse, I get gas and bloated and the constipation returns=all things I didn't think were related to the rash.

I understand this is a type of autoimmune dysfunction. Several doctors over the years have told me that I have an autoimmune disease, perhaps Lupus. I just blew them off figuring I'd be alot sicker if that were the case. That's why I don't think I have Celiac--not that sick. It's just these maddening rashes!
What can anyone tell me about DH and getting tested. I may not have an actual allergy but more of an intolerance and I'm afraid that won't show up on the test. Psychologically I need a definitive diagnoses to keep me on the GF diet. It's too easy to cheat if you don't have an absolute diagnoses.

I would appreciate any info and advice; especially from anyone with DH.

Thanks

Posts: 3
5/20/09 8:07 P

Chalk me up as another person that had a negative blood test.
A member of my family was diagnosed, and as I read up on on things CD was the only piece that fit the puzzle.

After getting the negative blood test I basically told my doctor that I wanted the endoscopy. The endoscopy revealed blunting of the villi.

Posts: 413
5/17/09 5:32 P

I hear the test for CD will often have a false negitive result. I had to eliminate the Gluten for 2 weeks and reintroduce it back into my diet. I knew without a shadow of a doubt I had an issue with gluten. My doctor did not want to test me since I already had my answer via the elimination diet. In order to be tested for CD I had to consume gluten and wheat again. I wasn't about to go there again.
Good Luck

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3/9/09 9:53 P

OK just a brief on me... the blood tests and the skin tests say that I have no issue with wheat (or dairy for that matter) but we have not had the digestive tract biopsy done as yet...

I am suffering from massive systemic inflammation and intense and debilitating pain in my hips and lower back.

I am very severely dairy intolerant to the point of it making me violently ill within 5 minutes, but no "testing" other than food challenge can prove that one.

The PA today mentioned going off of wheat to help with this systemic inflammation... So, here I am looking for support, information, and answers.

- Stephanie

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2/16/09 1:27 A

I haven't been diagnosed with anything officially yet, but my ND has put me on a GF diet for the next 4-6 weeks because we're pretty sure I have thyroid issues and that gluten is affecting it. I am choosing not to go through testing at this time because we're uninsured, and either way I will most likely benefit from the lifestyle change...here I come!

Posts: 1,445
2/1/09 2:52 P

Check out the recommended reading. It will explain it. Entire books have been written on the subject. Only 15% of gluten intolerance develops to Celiac Disease.
Barb (gf 28 yrs)

Edited by: GFNOMAD at: 2/1/2009 (14:54)

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2/1/09 2:15 P

so...my blood test came back negative for Celiac, but I am doing better on the GF diet. What's up with that? The stool tests are not in yet, though.

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8/29/08 4:59 P

Thanks for the article. I also forwarded it on to my sister, with like problems.

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8/29/08 2:03 P

Tricia Thompson, a dietician who specializes in Celiac & related issues, posted an article she has written regarding Celiac vs Gluten Sensitivity.
You can find the article at www.diet.com/dietblogs/read_blog.php?title
=Celiac+Disease+vs.+Gluten+Sensitivity
&blid=11838
Scoll down to the bottom right of the page.

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7/30/08 12:08 A

Insurance in MN and WI is 5-10 years where you still have to admit to it. Underwriting can also take into account the fact that this is something that doesn't go away and still rate you higher.

~melissa

Edited by: SUN_CLAY at: 7/30/2008 (00:10)

Posts: 34
7/29/08 8:35 P

INSURANCE ISSUES -- PREEXISTING CONDITIONS

One reason to keep Gluten Intolerance under control is for insurance eligibility. If you have learned to maintain a condition such as Celiac, colitis or IBD to the point of having no medical interventions for a period of time (I think it's 2 years, but I'm not positive), the condition is not considered a preexisting condition. It is possible to be honest about health conditions without paying for extreme coverage costs by keeping oneself as healthy as possible. Also, adjusting diet and self-treating symptoms at the first sign of a flare up (rather than hoping it will be different this time) may prevent need for a physician's intervention to go on the record, even though you ARE ill. Hope this helps.

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6/25/08 1:39 A

Dr. Lewey diagnosed me too! First my regular doctor told me he thought I had it and then I developed a rash. Then Outside the Breadbox told me to see Dr. Lewey. I went for the rash but he never looked at it. He scheduled me for a endoscopy next day before I realized what was happening. I get brain fog when I am exposed to cologne which he wears a lot of. I have multiple chemical sensitivity (not recognized by most docs). He said my small intestine was FLAT. An ei friend told me it can be flat from other things too. I also had blood work. I do not have celiac GENETICALLY as my DNA was done. If you really want to know about this illness IMO read: Celiac Disease A Hidden Epidemic.
I also recommend reading The Blue Death by Dr. Robert Morris. Its a real eye opener.

Posts: 165
6/24/08 1:01 P

You freeze it for 24 hours then overnight FedEx it, it's all included in the price. They send you a kit with complete instructions and prepaid mailer.
(Lovely conversation starter!)

Edited by: CHICOYAYA at: 6/24/2008 (12:59)

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6/24/08 12:58 P

did you do the mail in stool test or one at the dr.?

Posts: 165
6/24/08 12:12 P

I had my testing done through www.enterolab.com. Since it is a stool sample testing for antibodies, you can be GF when taking the test. I had been GF for over a month before deciding to take it, and my numbers were still quite high. They also do the DNA testing. (Ouch, I had two markers, which means my children will also have at least one.) My whole family has always had allergies, etc., and now we know why!

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5/17/08 2:22 P

great info...I'm constantly learning something new about this.

Posts: 802
4/1/08 6:25 A

this is such a great thread! Thanks!!!

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3/21/08 8:59 P

To me, I want my health care provider to know all about my health so they can treat me. If I decide to leave off some information because I am afraid I won’t get insurance, it might be that key piece of information that might have helped them solve my health problems.

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3/21/08 12:35 P

I am looking at a WI state group policy Application. It asks the following before a list of diseases and conditions.

"Within the past 10 years, has anyone named in this application been counseled, consulted or treated for any of the following...."


That was from the group application, Individual policies are more picky. Basically, Health Insurance companies are in the business of insuring healthy people. They do not make any money off you if you are unhealthy. Certain medical conditions cost a lot of money. Take Cancer for example. If you are applying for a policy and have cancer, an individual policy will deny a new customer. a group policy cannot deny, but will raise the rates.

~melissa

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3/21/08 12:14 P

One thing to consider is the impact on your coverage if you lie, by not revealing a pre-existing condition, when applying for healthcare. My bet is that the carrier can reject you if they find you have willfully withheld information. Why not be honest and find what the true cost of coverage would be? If we are not honest how can we expect good health care?

I have worked for companies that offer healthcare and do not require a questionnaire or checkup before getting coverage. So I have been blessed. I sure wouldn’t want to try to buy an individual policy.

I know that insurance can be very costly when you have a preexisting condition. I have a good friend, with a heart condition, who pays $1000/month for coverage. Wow!

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2/28/08 2:54 P

If I'd been diagnosed celiac back in the day, I'd probably have not needed the c-section I had! I just lay there waiting for things to happen I was such a slug (not diagnosed with probable hypothyroidism at that point and I'm sure I had that as well). If I had been diagnosed with celiac I'd have not had the hypothyroidism diagnosis, nor the depression diagnosis, nor the memory problems, the eczema, insomnia, aching joints, etc. that are all part of my record.

Part of my life insurance packet included a blood test - they tested me for HIV -negative, btw :). If they were smart, they'd be testing people for celiac! Or is "smart"? Have you seen the list of symptoms relieved by gf diet on the celiac websites? But I get your point about any medical condition.

Also, I'm trying to be more ingognito ... I don't care if people find "dotslady" -- she has a lot to say - lol :) Only a few people know me know me. At least I hope!

Thanks for the links Cheryl - I will check them out.

Edited by: DOTSLADY at: 2/28/2008 (14:54)

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2/28/08 1:17 P

Absolutely right. But the point I am trying to make is ANY thing you do medically can effect your rates. It is not just Celiac.

It is every medical condition. I remember years ago....15 years ago, I was talking with my cousin about universal health care. I am a liberal. I am all for everyone having health care. I use to be all for universal health care too. Until he pointed out that every thing you went to the Dr for would be in one centralized record. He used PMS as an example. Women have gotten out of being accused of murder by claiming temporary insanity due to PMS. So that would make PMS a mental illness, we know its not. So what if that got into the wrong hands and was on record that you have a mental illness. That too is another reason to be denied insurance or maybe a job.

I had forgotten about that. I guess I can see why someone would not want to go to their own doctor or insurance for a diagnoses. Let's just hope that Universal health care never takes place and we can reserve our rights to medical privacy.

The fact that any of us are on this board could be an issue to. I mean, this is not a private team. have you ever googled your user name? all your SP posts come up. this is my standard user name, email name, etc, etc. They say that employers are now googling the names of potential employees and seeing what they do in their spare time. They could learn that you you have diseases that they may not want on their insurance. For a small business, it could raise the rates a lot over a couple years.

Great info BTW.

~melissa

Posts: 54
2/28/08 12:50 P

There are many times that the Dr.s themselves are the reasons for unnecessary medical proceedures. Your quote:

c-sections are another thing that will take the rates up. why? if someone has had one once, they will have one again."

Most of the people who get repeat C-sections do so because their Dr. insists, not because it is necessary. I'm on a list with many folks who have had successful V-bacs (Vaginal birth after c-section). Sometimes it can be necessary, but it shouldn't be assumed, either by the Dr. or the insurance company.

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2/28/08 12:45 P

Yes, individual insurance takes into account any disease. You can also be denied insurance if you have been to the Dr with-in the past month. There is a time frame though. For example, cancer. I won't even suggest to a group to apply for health insurance if there has been cancer within the last 5 years. for an individual, 10 years. c-sections are another thing that will take the rates up. why? if someone has had one once, they will have one again.

The only real problem is if the person is buying individual insurance. In WI, insurance cannot be denied to a group under 50 employees. they might be max rated with the most expensive rates, but it still cannot be denied.

~melissa

Posts: 54
2/28/08 12:35 P

Yes, I am worried that my children will be denied life and or health insurance. Despite assurances that it is against the law to deny medical insurance due to genetic testing, (I read that in my health insurance magazine), it happens. Here is the top thread I found in Google just now when I searched for "celiac life insurance problem"

www.glutenfreeforum.com/lofiversion/index.
php/t614.html

Numerous people on the above url state how they themselves have been denied health and life insurance due to either a celiac diagnosis or even just a note in the Dr.'s file. Maybe we should start a thread on this topic, depressing as it is.

Don't even get me started on Hipaa. I give all my Dr.s an alternative form instead of signing theirs. Many try to tell me that I HAVE to sign theirs, but the law states that they only have to make an effort to get me to sign it. Of course, they can deny me coverage if I refuse - that should be illegal! Even so, I haven't lost a Dr. yet.
Read about it here:

www.cchconline.org/health_text.php3

Link to the alternative form is at the bottom.

Edited by: CHERYLNCOLORADO at: 2/28/2008 (12:44)

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2/28/08 11:06 A

Thanks ~melissa. I'm guessing it's not the employers she's worried about, but the insurance companies and "pre-existing" conditions. Is this a valid fear?

Also, just so I know: what does HRA and FSA stand for?

I'm trying to get life insurance right now ... they're looking under every nook and cranny. I feel so exposed and I can tell you I will not be as talkative at my appts anymore. (within reason of course). Most of my history was cause of the undiagnosed celiac, which the diet has improved my health. I guess I could have had my list of complaints and NOT have a diagnosis ... which is what we're talking about here! If I'd only known and sooner, my list would have been shorter! lol

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2/26/08 4:42 P

There are HIPAA laws out there preventing the employer from knowing the health condition of the employees. 10-15 years ago, you could find out who was the medical hog and causing the rates to go up. Now you can't. It still is possible to if the employer uses any type of plans that require the employee to turn in receipts for reimbursement. Plans such as self-insured, HRA, and FSA. BUT, most companies that use the above mentioned, also are big enough that they have a 3rd party administrator to handle those receipts.

Sorry, the Insurance Agent in me comes out now and then.

~melissa

Posts: 10,003
2/26/08 3:50 P

Your medical records haunt you for life: ie getting health and life insurance in the future could be difficult.

My sister won't get tested because she's just gotten her first REAL job after being part-time and in school for years (she's 42). She's on probation for a year or two (can't remember), and doesn't want it on her record for fear she'll be let go (teacher with annual contracts) and her next employer's health insurance will consider it a preexisting condition. She did get tested via Enterolab, and was positive + had two genetic markers. I had to pay because she's paying off school loans! :)

That's one thought.

Edited by: DOTSLADY at: 2/26/2008 (16:07)

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2/26/08 3:02 P

I'm just curious: Why don't you want the test result entered into your children's medical records? Isn't it better to have it there so that you have legitimacy with your doctors?

Ruth

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2/26/08 3:02 P

I'm just curious: Why don't you want the test result entered into your children's medical records? Isn't it better to have it there so that you have legitimacy with your doctors?

Ruth

current weight: 185.0

185 172.5 160 147.5

135

SparkPoints: (1,705)
Fitness Minutes: (370)
Posts: 68
2/26/08 3:01 P

I'm just curious: Why don't you want the test result entered into your children's medical records? Isn't it better to have it there so that you have legitimacy with your doctors?

Ruth

current weight: 185.0

185 172.5 160 147.5

135

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2/25/08 7:57 P

This is very helpful Cheryl, thanks for posting!

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2/22/08 2:34 A

We were going to go through Enterolab because the cost was only $149. Then our Denver CSA meeting had Dr. Lewey www.thefooddoc.com as our speaker this month and that changed my mind. Now I will be saving up for the Kimball testing at $380 plus per child.

As Dotslady mentions, Dr Lewey has an article on his website entitled " New changes in Prometheus celiac disease DQ genetic reporting help determine your risk of severe autoimmune gluten related disease" which explains that only some labs provide testing into the alpha subunit of the genes and provide a description of the two genes from both the mom and dad. Your results look like DQ2/DQ7 and DQ8/DQ5 rather than just stating whether or not you have the DQ2 or DQ8 celiac gene. Basically if you have only one copy of the DQ2 or DQ8 gene, you are at less risk than someone with two copies of these genes.

The first report on his website I read was "Update on the genetics of celiac disease". Here he explained that some labs, like Enterolab only provide testing for either DQ2 or DQ8 and only on the beta subunit. If you didn't have either of these, they would say you were not at risk for CD.

He explained at our talk that if you go to a lab that does both alpha and beta subunit testing, you will have a better idea if you have any risk for CD. The labs that only do the shallower testing would say you don't have CD if the beta subunit did not include DQ2 or DQ8. However, if your alpha subunit included these genes, you are still at risk for CD.

If I remember correctly from our talk, Enterolab, Bonfils, and Quest do not do the full testing. Prometheus, Kimball Genetics, and LabCorp will provide both the alpha and beta subunit testing.

The reason for testing my children now is to try to determine if they have ANY risk of developing CD according to their genes. If so, I will not let them eat wheat (as long as it is in my power). They have been asking me if they can eat wheat after 6 years of being gf. Were I to go to Enterolab, or another lab that offers the lesser testing, I could mistakenly tell them they are safe to eat wheat if the results came back no DQ2/DQ8 and if their genes indeed contained celiac genes on the alpha subunits!

At our talk Dr. Lewey told me afterwards that he was planning on putting a FAQ section about testing on his website that would explain how to read test results and commonly asked questions about CD testing.

Oh, I forgot to mention that I was not going through my insurance because 1) they wouldn't pay because after 6 years of gf diet, my kids have no symptoms, and 2) I didn't want any positive diagnosis via gene testing to be on their medical records. Someone in our chapter who knows, told me that I could go through Kimball if I had a 'medical professional' that they could send the report to. That person for me will be a nutritionist who knows about CD and wouldn't enter the info into my child's medical record.

Edited by: CHERYLNCOLORADO at: 2/22/2008 (02:37)

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2/14/08 1:54 P

KJDarling - I don't know who she's going through, but you can also find labs via that website I mentioned: www.glutenreactivity.net Remember to read the first page and click on the red box to activate links (or they'll take forever to open/not open ... at least when I tried). Look to the upper menu for a link for Lab Test Charts.

Two off the top of my mind are:

www.kimballgenetics.com

www.prometheuslabs.com
(I think this lab requires a doc's Rx ...)

The U of MD also does it (it's on the site). And at one of my celiac support meetings, it was brought up that the CDC (was it?) also does it and for under $100 ... I'd have to research that one though.

I hope someone can offer you up why one lab is better than another and why one lab would require Rx and another not. If not, maybe your answer would be better answered at the celiac listserv (just google and sign up - you'd be able to do a search for recent posts before posting that question).

Also visit www.thefooddoc.com - a gastroenterologist's blog (his wife has DH): he writes of Prometheus Labs on Feb. 9 with title:

"New changes in Prometheus celiac disease DQ genetic reporting help determine your risk of severe autoimmune gluten related disease"


Edited by: DOTSLADY at: 2/14/2008 (13:54)

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2/14/08 9:40 A

where doyou get the DNA testing for celicas done? Is it an independent lab or are you going through your doctor's office?

Posts: 54
2/2/08 11:02 P

My dh was officially diagnosed as gluten intolerant because his biopsy was negative, with low positive bloodwork. However, as your first article states, don't go GF before testing. We got the blood work, got off gluten, had the biopsy which was compromised because of not being full on gluten eating at the time. My dh's mom and brother are biopsy diagnosed so I have no doubt that dh also has it, regardless of what the Dr. puts down on the record. My kids never got tested but had some mild symptoms. We put everyone on a gf diet some 6+ years ago. The kids are now asking if they can eat wheat, so I am going to get the DNA testing done. I know that nothing is for certain, but 99% certainty that if the DNA tests come back negative they probably don't have celiac is something I can live with. I told the kids that if the tests are negative, they can eat wheat outside the house. We'll see. I suspect that my husband passed on at least one gene.

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2/2/08 1:38 A

I got this compilation of info from okceliac.com:

"Practical Gastroenterolgy magazine began a series on the Celiac Diet last September. The Celiac Disease Foundation (CDF) had most of the articles and the links posted on their website under 10 Ways To Raise Awareness (top left in sidebar at www.celiac.org, May 2007.

The articles are a GREAT resource for all celiacs, and to pass long (on paper or CD) to dietitians and doctors who could use an update! All have great information regardless of whether or not it pertains specifically to your lifestyle, like the vitamin information in the section for Vegetarians.

Enjoy!
Bev Lieven, Milwaukee"


September 2006, THE CELIAC DIET, INTRO.
healthsystem.virginia.edu/internet/digesti
ve-health/nutritionarticles/Sept06Parr
ishIntro.pdf

September 2006, CELIAC MEDICAL EXPERTS IN THE UNITED STATES
healthsystem.virginia.edu/internet/digesti
ve-health/nutritionarticles/Sept0603.pdf

September 2006, THE CELIAC DIET, SERIES #1.
THE GLUTEN-FREE DIET: AN UPDATE FOR HEALTH PROFESSIONALS
healthsystem.virginia.edu/internet/digesti
ve-health/nutritionarticles/Sept0601.pdf

October 2006, THE CELIAC DIET, SERIES #2.
WHOLE GRAINS AND THE GLUTEN-FREE DIET
healthsystem.virginia.edu/internet/digesti
ve-health/nutritionarticles/PaganoArti
cle.pdf

November 2006, THE CELIAC DIET, SERIES #3.
GLUTEN-FREE DINING OUT: IS IT SAFE?
healthsystem.virginia.edu/internet/digesti
ve-health/nutrition/CuretonArticle.pdf

December 2006, THE CELIAC DIET, SERIES #4.
HEART HEALTH AND CELIAC DISEASE
healthsystem.virginia.edu/internet/digesti
ve-health/nutritionarticles/DingaArtic
le.pdf

January 2007, THE CELIAC DIET, SERIES #5.
MEDICATIONS AND CELIAC DISEASE - TIPS FROM A PHARMACIST.
healthsystem.virginia.edu/internet/digesti
ve-health/nutritionarticles/PlogstedAr
ticle.pdf

February 2007, THE CELIAC DIET, SERIES #6.
KIDS AND THE GLUTEN-FREE DIET
www.healthsystem.virginia.edu/internet/dig
estive-health/nutritionarticles/Sharre
ttArticle207.pdf

March 2007, THE CELIAC DIET, SERIES #7.
COMBINING DIABETES AND GLUTEN-FREE DIETARY MANAGEMENT GUIDELINES
www.healthsystem.virginia.edu/internet/dig
estive-health/nutritionarticles/Kupper
Article.pdf

April 2007, THE CELIAC DIET, SERIES #8.
THE GLUTEN-FREE DIET: CAN YOUR PATIENT AFFORD IT?
www.healthsystem.virginia.edu/internet/dig
estive-health/nutritionarticles/Cureto
nArticle.pdf

May 2007, THE CELIAC DIET, SERIES #9.
THE GLUTEN-FREE VEGETARIAN
www.healthsystem.virginia.edu/internet/dig
estive-health/nutritionarticles/PracGa
stroMay2007.pdf


Edited by: DOTSLADY at: 2/2/2008 (08:40)

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2/2/08 1:18 A

I'm out of "sticky topic" tabs for the Gen'l Discussion forum, so I'm putting this topic here. I think there are people out there who don't understand what gluten intolerance or celiac is about. If you have further insight or thoughts to share for these "seekers of information", please do. I got the idea perusing celiac support group sites. The following is an excerpt from the Houston Celiac Support Group (edited to delete their local info):
THINKING ABOUT CELIAC DISEASE AS A DIAGNOSIS

Dear Friend,

We understand you are thinking of celiac disease/gluten intolerance as a diagnosis. We hope this letter will give you more information and specifics to research for yourself.

Celiac/gluten intolerance national and local groups are the best sources for information about the disease and diet. This diet is too much of a challenge for you to try it on your own. You are not alone. Representatives of these groups deal with the gluten-free (GF) diet every day, so they can point you to the tools you need to start your journey to improved health.

The question of testing and doctors is of paramount importance. Most gastroenterologists may see only about three true celiacs in their lifetime practice. Many celiacs have experience with quite a few doctors who cannot seem to find what is wrong with them. They have been diagnosed as having any of a myriad of complaints, including Irritable Bowel Syndrome, or told, "It's all in your head." It is not! Celiac symptoms can easily resemble those of an astounding number of other problems and diseases, mostly digestive diseases, or celiac can actually cause a litany of other diseases. That's why it's often called "The Great Masquerader." Only after finding a rare good doctor who knows something about celiac do patients find for certain they are celiac. A doctor must THINK the possibility of celiac disease before he can diagnose it.

Do not "try out" a gluten-free diet yourself. First of all, you do not yet have enough knowledge at this point to really get rid of all gluten. Secondly, the healing process will start, and the screening and blood test results will be compromised. A first step with a doctor is to ask him to do the "Celiac blood screening antibody panel" (4 tests plus serum IgA) and have the blood sent to a reputable experienced national laboratory. The Endomysial (EMA) and the new Tissue Transglutaminase (tTg) are more specific and sensitive for CD. However, the "gold standard" of diagnosis is taking multiple (8-20) biopsies of the small intestine with an endoscope instrument, and later good results on a gluten-free diet.

(for reputable labs, visit www.glutenreactivity.net/ Be sure to read the first page and click the red box at the bottom to be able to "activate" links ... then find "Lab Charts" in the top menu.)

Both the antibody blood tests and the endoscope procedure should be done WHILE LIBERALLY INGESTING GLUTEN -containing foods. If you have been eating GF for awhile, the biopsy is worthless. It is likely to give a false negative. If you have been GF for awhile, opinions vary on the amount of time you must eat gluten again prior to testing (called a "challenge"); the length of time recommended varies from three weeks to three months. Some say you should be as sick as you were to begin with. So if you are now eating gluten, it is prudent to continue till you have the blood tests and biopsy –– especially since reactions to offending substances are likely to be far more severe after being GF for even a short while. Many celiacs who react too violently to the gluten to ever go back on it for the required time choose to live the celiac life and diet without the benefit of a biopsy.

Some people come to the realization about wheat/gluten problems after an elimination diet. A wheat allergy is different from gluten intolerance, although many of our resources are definitely important for those with wheat allergy.

Some of the many and varied symptoms and reactions that celiacs and others who are intolerant to gluten may manifest are: GI distress including vomiting and chronic foul smelling diarrhea from mild to incredibly harsh; constipation; gas; foul smelling flatulence; abdominal bloating; mental fogginess; rash (Dermatitis Herpetiformis (DH) (often on elbows, buttocks, knees and feet); muscle wasting; increased or decreased appetite; loss of weight; bad temper; weakness; fatigue or lack of energy; and malabsorption, and/or anemia to osteoporosis, anemia, smooth tongue with cracks in the corner of the mouth, leg cramps from calcium deficiency, peripheral neuropathy, dental defects, and edema from low blood protein. Most doctors and celiacs believe that if you have DH, you are celiac and should be on a GF diet.

Celiac Disease is a genetic disorder related to all the other autoimmune diseases, for example Dermatitis Herpetiformis, Diabetes type 1, Lupus, Addison’s Disease, Sjogren’s Syndrome, Rheumatoid Arthritis, Myasthenia Gravis, Graves Disease, other thyroid problems, etc. A person could manifest with another autoimmune disease with some typical celiac digestive symptoms, atypical symptoms, or no symptoms. You may not see Celiac Disease back in your family medical history, but you might see another autoimmune disease. Many of these autoimmune diseases are located on the same gene and are closely related. Research has shown that undiagnosed or untreated Celiac Disease can cause the development of another autoimmune disease. Because it’s relatively easy to get a gastroenterologist to do the celiac panel of blood antibody tests, CD should be ruled out (or perhaps confirmed) with IBS (Irritable Bowel Syndrome) symptoms, osteoporosis, and autoimmune diseases.

First, you will find the celiac world is complex, and there is a considerable amount of controversy among celiacs, celiac organizations, and different nations as to what may harm us or cause and what will not; the UK, for instance, says food that has "wheat starch," which is supposed to have the gluten removed from it, is gluten free (GF), although U.S. celiac organizations do not advocate the use of wheat starch. We in the U.S. have zero tolerance for gluten.

GRAINS WE CAN EAT: Generally celiacs do well with rice, corn, potato, beans, sorghum, soy, flax, Montina, quinoa, cassava/manoic (from yucca plant) and any flours derived from these grains. We have many great cookbooks that use a combination of these flours, plus some xanthan gum (from corn) that acts as a kind of binding agent in baked goods.

GRAINS THAT CONTAIN GLUTEN in order of the amount of gluten in them: Wheat, barley, rye, and oats are the main offenders, followed by spelt (or spelta), triticale, and kawmut (or kamut). No celiac or gluten intolerant person can eat any of these grains, ever, the rest of his/her life. People with wheat allergy should also not eat spelt; spelt is a form of wheat. There is still some controversy as to oats, but until further clarified with good scientific research, we do not eat oats. Also, there seems to be no pure source of oats that is not contaminated.* No national celiac organization is recommending the use of oats at this time.

GRAINS THAT MAY NOT CONTAIN GLUTEN: Millet, teff, ragi, buckwheat (kasha), and amaranth do not inherently contain gluten. Many celiacs are able to eat some or all of these with no problem, but others may react to some of them due to such reasons as individual sensitivities or cross contamination. It might be good advice to avoid all of these grains until you are stabilized, and then perhaps try one at a time to see if you react –– remembering that some will react within an hour or two, but some rare celiacs may not react for as much as three days after ingesting an offending substance. Furthermore, some celiacs may not react at all after ingesting gluten, but it's doubly important for them to check out everything before they ingest it because any gluten still probably does some damage to their intestines.

There is also some undue controversy over what vinegars are GF and which are not, but if you follow this simple guideline you will be safe till you form your own opinion. "Pure" apple cider, wine, and rice wine vinegars are safe. The single word "vinegar" on labels must denote an apple source. It now seems that the distillation process does not allow any gliadin to get through into the distillate. You may have an individual sensitivity to vinegars. Newly-diagnosed celiacs & DH’ers should avoid ANYTHING questionable in this early stage.

Any individual celiac or anyone who is sensitive to gluten whether diagnosed or not, due to personal sensitivities may also react to other foods such as corn, cooked tomatoes, or even rice, so you must keep close track of what you have eaten before each reaction. It's a good idea to keep a food diary at first, listing everything you eat with brand names until you get a solid idea of what may be toxic to you. This is doubly important for those who have celiac children.

Also, many celiacs are lactose intolerant because the villi in the small intestine (which are damaged and flattened by gluten) are the site of lactase production -- specifically the tips of the villi which may be damaged first. Without this lactase we are unable to digest lactose. In this case some celiacs may be lactose intolerant, but sometimes this intolerance may disappear slowly after the small intestine has time to repair and is in good shape again. In bad cases this may take as long as two years, or not at all. The problem here is that the villi may lose their ability to produce lactase after not doing so for two years. So it might cause a little discomfort for awhile to reintroduce milk. The good news is that ingesting lactose will not damage the villi. Also, if you are lactose intolerant, getting some inadvertent lactose may cause digestive symptoms similar to ingesting gluten, and you won’t be able to tell what exactly is the problem. We suggest using few milk products for 2-6 months until you have the gluten-free diet under control.

Many who are just lactose intolerant may be able to drink Lactaid 100, which is real milk with all the lactose removed. (But check out the Lactaid pills for gluten.) But some may also be sensitive to the protein or casein in milk. In this case they may want to drink soy, rice, or almond milk, if they are not sensitive to that too. Two brands that are decent tasting and offer everything in their line of milk substitutes as (GF) are: Pacific (all rice and all soy milk substitutes) and Better Than Milk (all soy milk substitutes).

Celiacs must also be aware that they have often damaged their intestines so much that molecules of some substances can "leak" through the walls. This may cause sensitivities to other foods as well. So it's imperative to keep the intestine healthy as soon as possible to avoid this. Because of this "leaky gut," celiacs may come to be sensitive, allergic or intolerant to almost any food.

Here are some Internet sites we have found helpful. Keep in mind that not all celiacs nor all celiac organizations, nor all countries agree on everything:

• Do read and print out Dr. David A Nelson, Jr. M.D. article, "Gluten-Sensitive Enteropathy (Celiac Disase): More Common Than You Think" at www.aafp.org/afp/2002/215/2259.htm This article updates an article by Dr. Harold Pruessner written in 1998 in the same journal, "Detecting Celiac Disease in Your Patients." It is still available at www.aafp.org/afp/98030/ap/pruessn.html

These articles are good to copy and send to your own doctors, especially your internist or family doctor who might not be as familiar with CD and should be the first line of defense for patients. We want doctors to THINK CELIAC DISEASE toward the top of the list of possibilities rather than the last, as it used to be.

• Also print out Dr. Joseph Murray’s (of the Mayo Clinic) article at www.ajcn.org/cgi/content/full/69/3/354?.(If this does not work, search on J. Murray, Celiac Disease, or title, "The Widening Spectrum of Celiac Disease.")

• www.niddk.nih.gov/health/digest/pubs/celia
c/index.htm National Digestives Diseases Clearinghouse

• archinte.ama-assn.org/issues/v163n3/rfull/
ioi20641.html "Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States” (Feb. 2003): Alessio Fasano, MD; Irene Berti, MD; Tania Gerarduzzi, et al.,University of Maryland, Center for Celiac Research article.

• Web site for the Celiac ListServ:
www.enabling.org/ia/celiac/basic.html#inde
x.
In addition to the discussion group, the peripheral extensive files about many issues are extremely valuable.

• csaceliacs.org/ This is the Celiac Sprue Association/USA’s web site.

• Scott Adams also offers a lot of valuable information about celiac at this site: www.celiac.com/

Remember that having mostly respiratory symptoms may indicate an allergy, rather than an intolerance. More immediate symptoms resulting from an allergen indicate an allergy. However, many celiacs tend to have multiple food sensitivities.


*re: oats. It's safe to say that GF oats should not be part of your diet for at least the first year while the gut heals. There are three sources of GF oats - just search google or order/check your local health food store.

Edited by: DOTSLADY at: 2/14/2008 (13:36)

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