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JENCORINNE's Photo JENCORINNE Posts: 1,933
3/27/12 2:22 P

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What she can do probably depends on the state laws. I have an ND and know that in some states they can't even practice legally, luckily I'm in Oregon that treats ND's the same as MD's.

I just saw someone post this website that deciphers lab tests, if you have copies of the tests you can see what it says. If you weren't given copies ask for them, it's your right to have them although they might charge you a nominal copying fee. labtestsonline.org/understanding/ana
ly
tes/celiac-disease/tab/test


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NEWASHLEY's Photo NEWASHLEY SparkPoints: (573)
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3/26/12 4:41 P

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I don't know if they can order them or not. If there's a situation where she can't do something, then she has a doctor that she can consult with. Normally, I enjoy going to her a lot more than a doctor. Most of my appts with her are at least 30 minutes long because she's actually taking the time to talk to me and find the root of my issues.

Ashley

Goal 1: To be under 200 lbs before running a sprint triathlon on June 2, 2012.


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/26/12 3:52 P

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Can NPs order biopsies? I know they are limited, just wondering.

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/26/12 3:51 P

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Ok, I have Adrenal Fatigue and I was wondering how the gluten affected the body as well.
I am ALWAYS fatigue (like I hardly get out of bed; drive my car about once time a month anymore) type of fatigue. I have just started getting off of gluten and was wondering how long it takes for your body to adapt.

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NEWASHLEY's Photo NEWASHLEY SparkPoints: (573)
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3/26/12 3:35 P

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After my binge, I had horrible gas/stomach aches, felt nauseous, and got a horrible migraine. I think that my depression, fatigue and general "foggy" feeling are linked though, too.

Ashley

Goal 1: To be under 200 lbs before running a sprint triathlon on June 2, 2012.


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/26/12 1:35 P

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How does the gluten affect you?

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NEWASHLEY's Photo NEWASHLEY SparkPoints: (573)
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3/26/12 12:34 P

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Thanks everyone. I really appreciate the thought that you all put into your responses. I'm going to talk to my NP about why she chose to not do the biopsy and at least ask for a full serum IgA to be done. It will give me some insight as to whether or not those numbers were really normal or if I'm low naturally and so the results were high.

This past weekend I did what I called my "goodbye to gluten tour" and I felt like crap. I was planning on eating all gluten-filled things for the weekend to enjoy some of my favorites that I won't be able to have anymore. I didn't make it through the weekend before switching to gluten free. I kind of feel like that was a test of sorts and pretty much proved to me that this is something I need to cut out of my diet.

You're all awesome! I'm so glad I found this board.

Ashley

Goal 1: To be under 200 lbs before running a sprint triathlon on June 2, 2012.


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OAKRUN Posts: 26
3/26/12 12:10 P

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OK, I'll give my best guess at a way to proceed. I'm not a doctor so clear any changes you might make with your MD or health practitioner.

My health saga started with a dramatic weight increase of a period of a couple of years, for no particular reason. Ultimately I was diagnosed as hypothyroid several years later. Over the next 5 years, chronic fatigue surfaced, adrenal fatigue, followed by a severe bout of digestive upset due to low levels of stomach acid, and the list goes on. So I do understand your situation.

About 2 years ago I finally decided to determine if I was gluten intolerant to rule that in or out as a root problem. I'd made a ton of dietary changes that had mixed results (and produce no weight loss) so I needed clearer direction. No one thought gluten was a core problem for me, but I needed to be certain so I gene tested. Gluten was definitely a problem as is casein (dairy). That provided dietary direction plus it became clear why certain diet strategies were counter-productive.

However, if I had been having intestinal tract disturbances earlier, such as diarrhea or bowel issues, I would have done an elimination diet such as the one described here: www.drcranton.com/elimination_diet.h
tm
. I'd use a daily journal and do a food diary, complete with how I was feeling after each meal, and noting the times of any reactions. www.fitday.com/ has an online diet journal which is free, and that provides additional info on nutritional shortfalls.

An elimination diet theoretically should improve the candida situation since it's essentially an anti-candida diet as well as a GF diet. It's also likely that you'll feel much better on an elimination diet if you are gluten intolerant. The leaky gut situation will take more time to resolve but it's to be hoped that you could see some definite improvement on an elimination diet.

An elimination diet may seem difficult, but the whole point is to simplify the diet to where you can identify what foods may be causing your body to react poorly. Once you've determined if eliminating gluten helps, you can then add back in foods one at a time waiting 2-3 days between new additions to track reactions. Eventually you'll have a pretty good list of what foods are 'safe' for you. Foods that don't upset your digestive system, make you break out in hives, make your sinuses go berserk, or cause you to be extremely fatigued should be noted :)

After I found I was intolerant to both gluten and dairy, I used GF processed foods for a while. however I determined I was reacting to nearly all grains so I adopted a Paleo Diet and shifted to fresh foods, as described by Dr. Loren Cordain. I find it the easiest way to avoid my trigger foods. It does mean you have to learn to cook, but it's not that hard.

According to the medical literature, the leaky gut situation may take months to correct. You may feel better sooner oe you've identified trigger foods, but the healing process takes time for the immune reactions to calm down. Read up on Zonulin and wheat and you'll see the connection, and why it's important to be GF.

Resolving any adrenal situation is also time consuming. You can get a cortisol test from your MD and possibly a prescription that might help, but from my own experience, it takes a year to two years of the correct diet (with lots of protein) to rebuild the adrenals. You've drained the energy tank and it takes time to refill.

My observations and opinion is that gluten causes a leaky gut which puts a strain on the adrenal system wearing it down, and the thyroid tries to take up the slack until it is worn out, creating extreme fatigue, endocrine imbalances and the whole immune system goes haywire. For me, until the gluten situation was corrected, treating the thyroid situation and the adrenal situation was just symptom treatment. Fixing the gluten problem has been a critical issue. Too bad I didn't know about it sooner.

In my case, finding out what was causing my problems has been a matter of peeling the onion. Sorting out the thyroid problem revealed the adrenal problem. Sorting out the adrenal problem revealed the digestion problems. Sorting out the digestion problems revealed the connection to gluten and casein. Working within a GFCF framework I determined I was also reactive to pretty much all grains.

On the plus side I feel much, much better after 2 years on a Paleo diet. MUCH better. So hold on to hope that life will improve.

Now if you are lucky, you might live in a region that has a good nutritionist available or a medical person who is knowledgeable about Celiac's and gluten intolerance. If you can, find a local Celiac's group and pick their brains. They might be able to advise you as to medical care and contacts. Groups are also helpful on locating good food sources, safe restaurants, and provide local support.

I hope this helps and isn't more confusing.



CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/25/12 9:49 P

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Thank you for the info but now I am even more confused, more overwhelmed then ever. I have so much going on with my adrenals and candida, and leaky gut and now the food sensitivities...not sure where to turn or what to do.
Thanks though.

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OAKRUN Posts: 26
3/25/12 7:19 P

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Mainstream doctors commonly test for Celiac's through blood and saliva tests which can be done at nearly all labs. If these test positive and if the person has GI discomfort, the doctor will often order a biopsy.

Celiac's disease confirmed by an intestinal biopsy is considered the 'gold standard' of diagnosis. The doctor then tells you to eat gluten-free forever. Those traditional tests can rule Celiac's 'in' as a diagnosis, but not 'out'. If you test positive, you have Celiac's. If you test negative, it's a 'maybe'. The tests simply are not definitive.

The problem with that diagnostic standard is that a lot of people who do have active Celiac's or who are gluten sensitive will fail to get diagnosed and prescribed a gluten-free diet. Nowadays many doctors will order gene tests in addition to blood and saliva tests for ambiguous cases. However, not all labs gene test for the full spectrum of gluten disorders.

There's a good article on gene testing at: www.celiac.com/articles/21567/1/Ten-
Fa
cts-About-Celiac-Disease-Genetic-TesR>ting/Page1.html
. When I gene tested it was an out-of-pocket expense. Nowadays more insurance plans will cover the expense, but again you need to make sure the right lab does the work. Labs that test only for Celiac's will often miss gluten intolerance. But it is a growing field and more options are becoming available.

But like I said earlier, if you know that eliminating gluten from your diet makes you feel terrific, do you really need the formal confirmation of a doctor that you have an gluten disorder, and have the MD tell you to avoid gluten in food? If you do, get more tests done.

I needed the gene tests because I did not have the gut symptoms. I had other symptoms that are often associated with gluten sensitivity. Consequently the gene test was the only one that would give me useful information. I wanted some data before committing to a lifelong GF diet. Keep in mind that having a gene set associated with Celiac's does not mean you will become a Celiac. Celiac's is triggered by exposure to gluten. Sometimes it is triggered by a lifetime of gluten. Sometimes it's triggered in infancy. Once triggered, it's not reversible.

But with either Celiac's or Gluten intolerance, the only known successful treatment is a strict gluten-free diet. You need to be sure in your own mind that gluten is the root of your poor health because a strict gluten-free diet means NO GLUTEN. And while it is easier now than in the past, it's still not easy.


CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/25/12 5:01 P

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I tried a new supplement today and my stomach hurt so badly, that I thought I was going to have to go to the hospital. It is called Adrenal Stress-End. Anyone else tried it?
Where do you get these other kinds of tests done? I had the blood work and the saliva and I thought that was all I had to do.

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OAKRUN Posts: 26
3/25/12 12:50 A

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A biopsy can rule Celiac 'in' but not 'out'. Blood tests have the same problems. If you need the certainty of a diagnosis from an MD or a specialist before embarking on lifelong exclusion of gluten, I'd recommend the genetic tests.

I didn't have the classic digestive issues, so I knew a biopsy would be pointless. So I gene tested through Enterolab. Turns out I carry a double set (one from each parent) that is strongly tied to gluten intolerance. So the recommendation was to go GFCF, and that's what I have done. If you decide to gene test you need a lab that tests for both Celiac and gluten sensitivity gene markers, so do your homework.

Testing can provide important data. It may help you in deciding what to do about diet. Personally, I don't think biopsies are reliable except in late stage Celaic's. However, since you have digestive symptoms and if you improve by going gluten-free then it's likely that you are gluten sensitive. The only reliable way of stopping symptoms and reversing the damage caused by gluten is a gluten-free diet. If you go GF and the digestive issues improve in a month or two, then you have confirmation that your nurse practitioner was spot on target.

Often people who are Celiac or gluten intolerant noticeably improve within a few weeks after going GF. But healing the damage system-wide often takes one to 2 years. And once triggered, gluten intolerance/Celiac's itself is not reversible, even though the damage often is.

From a practical standpoint there seems to be very little difference in treatment between Celiac's and Gluten sensitivity. Celiac's shouldn't eat gluten. Gluten sensitive people should not eat gluten either.

I did want some degree of certainty so I am glad I gene tested. Best medical money I've spent in years. I follow a Paleo diet since it eliminates all my trigger food. It's taken a couple of years, but life has improves substantially.

Hope this helps.

CANES4EVER63's Photo CANES4EVER63 SparkPoints: (14,810)
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3/24/12 10:57 A

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I don't believe that testing is necessary. It tends to be that in my family, once you hit your mid to late 40's, you develop a gluten and lactose allergy. One of my aunts was officially diagnosed with Celiacs through the blood testing, but I have another aunt who just "knew". Since her sister was diagnosed and she was having stomach issues, she cut the gluten out and hasn't looked back. About a year ago, my dad followed suit and my mom and I also decided to go GF. Whenever my parents, my dad more so than my mom, have gluten, they have stomach issues. I had gluten for the first time about a month ago and I had the abdominal pain and cramping (although this could just be coincidental as I was having other stomach issues at the same time). For me though, I don't want to know. If I simply tell myself that I can't eat gluten, then I'm 100% avoiding the foods that have gotten me into trouble in the past, ie cakes, cookies, brownies, too much pasta and bread, etc. I know there are GF options out there, but I just don't want the carbs. It's so much healthier eating GF! If my parents or myself were to ever be tested and it came back negative then that would sort of throw off the whole "I can't eat gluten" as an excuse to not eat the high calories carbs. It's a lifestyle change, and although I may be able to tolerate gluten, I simply don't want to find out because I'm enjoying eating all of these healthier alternatives that I'm "forcing" myself to live off of.

Rachel, NC

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DJ4HEALTH's Photo DJ4HEALTH Posts: 41,422
3/23/12 10:51 P

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Blood tests are not that accurate so you might want to get it but just remember that you still need to stay on the gluten until the test is done.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/23/12 8:22 P

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My sister and one of my daughters has it as well.

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CINDYTW Posts: 5,783
3/23/12 8:08 P

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It is a personal decision to everyone. I left it at reading about symptoms and the blood tests and just "knowing" this is what I have. My Mom had it as well. The endoscopy can be wrong also and you DO have to be eating gluten right along to have it show anything.

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/23/12 3:37 P

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I agree with you totally on all that you said. Good thinking! :)


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JENCORINNE's Photo JENCORINNE Posts: 1,933
3/23/12 3:34 P

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This is a decision you'll have to make for yourself and everyone has different feelings on the subject.
Personally, I'd push for the CD testing. 1. It's genetic so it's good to know if you can pass it onto your kids, and for other family members some of them will refuse to even think they might have an issue til you have proof (or even with the proof). 2. With the diagnosis you can use the difference in cost on foods under health costs. But still has to add up to the 7.5% of your income to make it worth it. Assuming you're in the US, Canada is similar, other countries have different rules.

The drawback is you shouldn't start the GF diet till all the testing is done or will be false negatives. I will add since it is genetic you can do genetic testing at any time but if positive only says you can develop active CD not that it is active.

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
3/23/12 3:34 P

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After blood work and saliva tests, I was told that I didn't have Celiac disease. (THANK GOD)
But, my stomach has been tied up in knots and on fire for the past 24 hours.
As far as further testing, most of our insurance companies won't pick up the bill for this anyway but if you have the money, I would do it. If not, I would keep googling and finding out information for yourself the best you can. With all of your symptoms that you described, I had Adrenal Fatigue as well. Have you checked into that? Not trying to add one more problem on top of your others...I just wish someone had mentioned it to me...

This fatigue is just crazy awful isn't it??? :(

Edited by: CWPRAISINJC1 at: 3/23/2012 (15:36)
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MEWBDK928 SparkPoints: (855)
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3/23/12 3:27 P

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I have each of the symptoms you listed in your post. I have not been diagnosed one way or the other yet (no health insurance :-( ) but when I went completely gluten free, I felt a ton better. I think a diagnosis of celiac's over a sensitivity may just bring piece of mind. Either way though, eat gluten free and I'm sure you'll start to feel better!

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NEWASHLEY's Photo NEWASHLEY SparkPoints: (573)
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3/23/12 3:20 P

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I introduced myself yesterday. After having abdominal pain for a few months, my nurse practitioner ran a blood test to test for celiac. My levels came back elevated for transglutaminase IgG, but normal for transglutaminase IgA. So, my NP diagnosed "gluten sensitivity" and said that I don't have celiac. She did tell me to go on a g-free diet. From what I've been reading over the past few days, I'm feeling concerned about that diagnosis.

I have tons of celiac symptoms: abdominal pain, headaches, depression, extreme fatigue, a chronic cycle of constipation/diarrhea, pain in my joints and peripheral neuropathy.

So, knowing all of this would you push for a biopsy to confirm celiac? Is it worth it to try to get a confirmed diagnosis since she already wants me to go on a g-free diet? Is she right and I'm just over-thinking all of this?

Thanks so much for your help!

Ashley

Goal 1: To be under 200 lbs before running a sprint triathlon on June 2, 2012.


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