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OAKRUN Posts: 26
10/31/10 11:25 P

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By all means get checked out for ovarian cancer. Ruling it out will give you some peace of mind. Meanwhile, take a look at the may Clinic's discussion of ovarian cancer. They say, "The key seems to be persistent or worsening signs and symptoms. With most digestive disorders, symptoms tend to come and go, or they occur in certain situations or after eating certain foods. With ovarian cancer, there's typically little fluctuation symptoms are constant and gradually worsen."

www.mayoclinic.com/health/ovarian-ca
nc
er/DS00293/DSECTION=symptoms


And you are not a hypochindriac - you feel sick and don't have any concrete answers as yet. It's like testing drinking water - they only look for certain things in lab tests. Not finding X doesn't mean that Y isn't there. They just didn't test for Y.

I'll mention again, the Paleo Diet. It excludes grains, dairy, legumes, and the nightshades for sensitive people. Details can be found at Dr. Cordain's web site for www.thepaleodiet.com/

It's pretty easy to follow and use for a food allergy elimination eating plan while you are trying to sort things out.

Tracking a food intolerance is much trickier than identifying food allergies. Your MD may not be much help finding out what foods you can tolerate as none of the food intolerance lab tests appear to be more than 75% accurate. Remember, a negative celiac test only means a 'maybe'. Lots of people on the boards have had negative lab tests yet were later found to be celiac or gluten intolerant.

You mentioned you are a type 1 diabetic and that one parent and a couple of siblings have digestive disorders. That by itself is pretty suggestive of a gluten problem and a genetic link.

You really need to read up on gluten intolerance, gluten syndrome, and leaky gut issues. Try searching for information on Zonlulin, which will tell you about the leaky gut issues of wheat. Or look for the article "The Dark Side of Wheat' which is posted several places online.

I am certainly not opposed to the medical profession by any means. They just don't seem to ahve good tools for understanding gut issues. Plus I've found that most MDs I've worked with have little knowledge or interest in gut issues.

Thus I feel anyone with digestive issues has to become well informed and proactive about their own health. Otherwise they'll become a test subject for an endless array of prescription meds in the shotgun method of modern medical problem solving.

Ask yourself - is what I eat the root of the problem? If what I eat is making me feel ill, what should I do?

Tests can be helpful in giving a person the confidence to follow through on dietary changes. But ultimately it's how do you feel when you don't eat gluten or X. If you feel better, well.....isn't that a test, too?

Nobody insists someone with a peanut allergy eat peanut butter - Or that someone who breaks out in hives after eating strawberries go eat a strawberry smoothie, or that someone who has hay fever go mow the lawn.

We all hope you feel better soon. Gut issues can be incredibly debilitating and nobody understands unless they've experienced them.

MICHTOTMAN's Photo MICHTOTMAN Posts: 815
10/31/10 3:34 P

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Thank you all for your input!!! Since I last posted, it has looked like this:
Monday - appointment, tests run, GERD diagnosis, start Prilosec
Tuesday - felt unbearably ill. Decided to go gluten free again. (I had had some gluten Sat, Sun and Mon after having been gluten-free (I think - who knows if I've caught all the hidden gluten yet) for about 2 weeks. I also swore off all the GERD foods (acid producers: coffee, tea, alcohol, tomatoes, spicy food and chocolate) as well as dairy.
Wednesday, Thursday - still felt bad, but pain is less. Celiac test comes back negative, pancreatic, liver & kidney functions are all great, anemia is ruled out as is a bacterial infection.
Friday, Saturday - pain is intermitent, nauesea still there
Today (Sunday) - pain almost gone, nausea still present.

Obviously I'm improving (again), but I'm sure my doctor will attribute it to the Prilosec. They told me to give it a month. I have felt so bad I'm not even tempted by any of the foods on my sworn-off list (except maybe coffee...) in case any of them is the cause. I think I can be sure that if gluten is not the cause, it certainly exacerbates it!

Now a new twist --- my mom put me on to the symptoms of ovarian cancer (a family friend was just diagnosed) and dang if I don't have all but one of those too. So, now I'm a little bit freaked out... I'll be emailing my doctor again and seeing if I can get again for a pelvic exam 3 months ahead of schedule. I'm starting to feel a little bit like a hypochondriac...

Edited by: MICHTOTMAN at: 10/31/2010 (15:36)
The greatest glory in living lies not in never falling, but in rising every time we fall.

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OAKRUN Posts: 26
10/31/10 2:02 P

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In my opinion, Celiac's is an end stage of gluten syndrome, sensitivity, intolerance, whatever you want to call it. A negative test is not an assurance that you are not gluten sensitive. A positive test is a definite yes. A negative test is a maybe. Even a biopsy, which is the medical 'gold standard' is not an absolute yes or no as you have to have significant gut damage for the MD to find.

If a person is in an early stage of celiac's then 'end stage' tests aren't going to be reliable (at least that's my opinion). If a person feels better without gluten then that's a true test by itself.

My own gluten saga actually started with a trip to the ER with awful, awful stomach pains. The ER staff ran $9000 worth of tests and came bounding back in to tell me that they couldn't find anything wrong - must have been something I ate. While I appreciated the fact I wasn't having a heart attack, pancreatitis, kidney disease, gallstone attacks or whatever, I left the hospital without obtaining any answers at all as to why I was so ill.

Fortunately my FNP was a pretty sharp cookie and she thought I probably had low stomach acid levels. Supplementing the stomach acid and taking enzymes with any meals with animal proteins helped a lot but my health was still declining. By ruling out physical causes (at the hospital) that left food as the possible source of the problems.

I began to suspect celiac's, but since I'm obese, don't have diarrhea etc nobody would take me seriously. I was pretty sure that I wouldn't test out by the traditional methods (blood tests, biopsy). My reactions to gluten are more like fibromyalgia and other autoimmune responses.

So... I decided to get gene tested, which would at least tell me if I carried the markers. Gene tests are reliable. You can have the genes and NOT have celiac's, but if you have the genes and symptoms, then celiac's is a definite possibility.

I used www.enterolab.com for the gene tests since Enterolab tests for both celiac's and gluten intolerance. They will work directly with patients - no MD's permission needed and you don't have to be eating gluten recently to get tested. You do have to pay for the test out-of-pocket. I recommend everyone go and read their articles under 'Research and Education'.

Long story shorter: I carry a double set of gene markers (one from each parent) for gluten intolerance and since I also did Enterolab's stool tests I learned I was actively reacting to both gluten and casein-dairy. So, I've gone gluten-free and casein-free. Actually, I've gone completely grain-free (Paleo Diet). And while I didn't get better right away, my joints quit hurting and my labs show that my cholesterol dropped 25%, my inflammation markers (CRP) dropped significantly, and life is definitely improving.

The point I am trying to make is that identifying Celiac/gluten syndrome is an inexact science. Your local doctor is likely to be at least 10 years behind in working knowledge of the latest research on celiac's, gluten intolerance, etc. even if they recently graduated - Tradition versus research.

I think that if you feel better by avoiding gluten, then that should be an answer in itself. The only effective treatment for Celiac disorder/gluten intolerance is to be strictly gluten-free.

It's entirely possible that your particular symptoms are not actually gluten-related, but again, if you feel better avoiding gluten, then that's a clue that should be paid attention to. There are plenty of non-gluten whole grains out there. I don't think anyone 'needs' to eat gluten to be nutritionally healthy with today's grocery choices.

If it was me,I'd get gene tested - oh wait I did that ROTFL. And I've never regretted that decision.

That's my opinion :)

MOMOU18 Posts: 93
10/31/10 11:29 A

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I would find a different Dr. I would not put myself through the Gluten Tests unless you have to get any other kinds of testing done at the same time. The Blood Tests are not accurate. The only accurate test is the Biopsy. But if you do not need any other testing (like an endoscope) I would just go GF and feel at least some better. Then after doing that and not feeling better I would go further in testing.

There could be some Hpylori issues going on as well.

Good luck!

2009GETINLINE's Photo 2009GETINLINE SparkPoints: (15,569)
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10/31/10 8:42 A

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I went out with friends to IHOP. I had 1 pancake...It took 5 minutes for my stomach to bloat, Then the ickyness set in. I can relate to your ickyness feeling. So no more pancakes!

Yo ticker! Thank you for moving down:)
Turtle take 2 steps down...ugh! ugh!


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JENCORINNE's Photo JENCORINNE Posts: 1,933
10/27/10 5:08 P

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I forgot in my post that constipation was one of my symptoms but alternated with diarrhea, and didn't have stomach aches but get them now with gluten.

There was an article in The Oregonian today that made me think of your Dr and giving you Prilosec. It boiled down to how Dr's have been handing out PPI'S(the classification of pills) like candy with the slightest of symptoms. Now the side effects are coming out - thinning of bones, and worse when go off them so pretty much making the person dependent on them for the rest of their lives. One Dr cited in the article admits to passing out prescriptions left and right then had to fight his own Dr to NOT get one for himself when he really didn't have a problem. Makes me wonder how much of a kick back the Dr's get for prescribing these meds.

I tried finding the article online and couldn't, sorry.

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GFNOMAD's Photo GFNOMAD Posts: 1,506
10/27/10 3:01 A

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The doctor is not up to date on the symptoms of Celiac/Gluten sensitivity. Constitpation is one of the symptoms. But there can be many reasons and the symptoms overlap. If you stop eating gluten before the test, they will likely be negative. That gets you nowhere because the doctor loooks at it and thinks I told you so even if they don't say it.
We have good references on this site. Print one out from a reputable medical site such as the Chicago Celiac site or one of the others. www.celiacdisease.net/symptoms

Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
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GFNOMAD's Photo GFNOMAD Posts: 1,506
10/27/10 2:59 A

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The doctor is not up to date on the symptoms of Celiac/Gluten sensitivity. Constitpation is one of the symptoms. But there can be many reasons and the symptoms overlap. If you stop eating gluten before the test, they will likely be negative. That gets you nowhere because the doctor loooks at it and thinks I told you so even if they don't say it.
We have good references on this site. Print one out from a reputable medical site such as the Chicago Celiac site or one of the others.

Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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JENCORINNE's Photo JENCORINNE Posts: 1,933
10/27/10 1:47 A

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I agree that the Dr was rather quick in dismissing your concerns but at least ran the test. I think I'd print out this list - glutenfreeworks.com/gluten-disorders
/c
eliac-disease/symptom-guide/
and check all the symptoms that you are aware of, I didn't think I had that many but after getting glutened a few months after going GF made me realize I had more symptoms then I thought.

I know someone pointed out that it wasn't the pain and suffering wasn't worth the tax write off but another point is that this is genetic. With a proper diagnosis family members are more likely to be tested and might be faster getting diagnosed with showing a family connection.

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SHORTI0805's Photo SHORTI0805 Posts: 253
10/26/10 11:24 P

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Michtotman,
Sounds like your doctor ruled it out very quickly- but I wouldn't buy it. Yes, those are some symptoms, but there are many, many others. I received a call from my doctor on a Thursday, saying that my blood test was +, but to keep eating gluten until my endo on that following Monday. I, of course, binged on gluten for the 3 days in between, and felt absolutely horrible! The endo also confirmed celiac, and, looking back, it wasn't worth the 3 days of pain to eat a pretzel sandwich from Issac's (but of course, it tasted delicious!). I have a friend who suspects she has it. She went gf without the blood test. She feels so much better now that the thought of eating gluten again just for the formal diagnosis isn't worth it at all. My advice, do what feels right for you. Even if the test comes back negative, you might have a gluten sensitivity. If you feel better without gluten in your diet, then stick with this! It'll be better in the long run. Hope it goes well for you!

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CINDYTW Posts: 5,783
10/26/10 11:17 P

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I say if the test is negative, but you feel better off gluten, don't eat it! There is only one treatment for Celiac disease anyway...GLUTEN FREE!! I refused my biopsy because I couldn't face a gluten challenge...and it really isn't that important other than if you are trying to get tax credits or something for foods and need a doctor's diagnosis to substantiate it. BTW...I "gluten-loaded" before my blood test to be sure. I ate nothing but pasta and bread the night before, also because I knew that would be the last time! I never ate it again.

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MEXGAL1's Photo MEXGAL1 SparkPoints: (230,535)
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10/26/10 10:14 P

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The doctor that I just met with this week who believes I have Celiac and should be gluten free specializes in autoimmune diseases and she explained to me that the gluten test results are so often false negative and she believes that mine were and gave me the option to retest or try gluten free. I have been gluten free for almost a week and feeling much better....so I say pay attention to your body and do what feels good. If all I have to do is change my diet to feel good, it's a no brainer for me. I go back to her again next week.

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SHANNONLL Posts: 38
10/26/10 9:50 P

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I am new to the group and went gf a couple months ago. I was suffering from extreme bloating, stomach cramps, fatigue, and bruising in the year after my son was born. I feel like my story is similar to yours. I kept going to the doctor and nothing was helping. I went gf and felt so much better. At first I also really wanted a diagnoses, but did not want to go back on gluten.

So here is my question to the group. If you would go gluten free because you feel so much better no matter what the test results, why would you put yourself thru the gluten challenge? I am still considering going back on gluten to get tested. I don't know what to do.

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MICHTOTMAN's Photo MICHTOTMAN Posts: 815
10/26/10 8:34 P

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PS - The book is waiting for pick up at my local library... I'll be getting it tomorrow!

The greatest glory in living lies not in never falling, but in rising every time we fall.

NELSON MANDELA


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MICHTOTMAN's Photo MICHTOTMAN Posts: 815
10/26/10 8:32 P

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UPDATE - my appointment was yesterday. The doctor (my doctor's "partner" a sweet young thing with less than 5 years experience - my speculation only) was absolutely sure that Celiac was not the problem because
a.) "You would be experiencing diarrea" (I'm not - but constipation has been a problem) and
b.) "You would have more pain in your intestines than your stomach" (the pain is much worse in my stomach; I'm only tender in the intestinal area...
but she did order a blood test just in case. She didn't seem to think that my joint pain, headaches, dizziness (BP is normal) or easy bruising had anything to do with the problem, but that they were unrelated issues.

She WAS sure, however, that it's GERD. I drank a lovely "GI Cocktail" that did not make me feel any better (in fact it made me nauseous) and am now taking Prilosec. If all my tests (liver, kidney, anemia, Celiac) come back normal, I'm supposed to give the Prilosec a month before I come back in. She did not recommend removing gluten from my diet again - in fact she thought that was completely un-necessary and just making it harder on myself.

Problem is: I FEEL ABSOLUTELY HORRIBLE! I have not had any of the GERD problem foods (alcohol, coffee, tomatoes, spicy foods or fried foods ) in over 48 hours. And even then it wasn't that much (one serving of pasta sauce, 1/2 glass red wine and 1 cup coffee in the past 2 weeks!) I don't think I can give this a month! I'm hoping the tests come back positive so I can be done with this. But if they don't (I added gluten back in my diet, and small amounts at that, only 48 hours before the test), then what? I cannot feel like this for a month!

again, what would you do???

Edited by: MICHTOTMAN at: 10/26/2010 (20:33)
The greatest glory in living lies not in never falling, but in rising every time we fall.

NELSON MANDELA


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NORMAMURIEL Posts: 106
10/25/10 7:00 A

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Welcome to the group. You need to buy the book Gluten Free For Dummies. It will start you on the process and give you insight to a lot of unanswered issues you may not even realize you have. The book also confirms if you go gluten free you will test negative since your intestines start to heal themselves when gluten is absence. I am not sure how long you have to go back on gluten to ensure your test is accurate so while I would eat gluten, and be tested, if it came back negative I would have to decide to trust the test or trust my body. Get the book it will help with this decision.

MICHTOTMAN's Photo MICHTOTMAN Posts: 815
10/24/10 6:39 P

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Thanks everyone. Looks like about 90% of you are for eating gluten 'til I"m sure that's the problem, so yesterday I had one piece of toast (didn't feel very good about 3 hours later) and today I've had gluten at every meal. I'm feeling worse than I did last week, but it's not horribly worse either. I'll have some more tomorrow and tonight and see what happens...

The greatest glory in living lies not in never falling, but in rising every time we fall.

NELSON MANDELA


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CINDYTW Posts: 5,783
10/24/10 5:18 P

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I would continue eating gluten for now, because the longer you are off the worse you will feel going back on to get tested. I had the blood test and went GF IMMEDIATELY after, and then never got the biopsy because I couldn't risk the pain and misery a month later when I could get in to see a GI doctor. My blood results were high enough noone questions I have Celiac...

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TELLITFORWARD SparkPoints: (10,826)
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10/24/10 1:42 P

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I agree about IBS beiing a catch-all for what doctors don't understand. I do not have celiac, but a very strong wheat intolerance. My daughter just went GF as well, and has had a great deal of help with monthly cycles. She has endomitriosis and the symptoms are gone!
For me, it was a bout with the flu which woke me up. What do you eat when you're just feeling like eating something? Crackers, dry toast, etc. I never got better. My diagnosis was from a naturopath who is very good at getting to the heart of a problem.
My test to prove the diagnosis was to eat a serving of wheat six weeks later. Oh, the pain! IBS gone rogue! Never want to cheat!
I'm glad I can have dairy. That is a fave for me, and almond cheese and soy milk are nog on my list of likes. I did dairy free before the GF.
Good luck, and realy, really read ingredient lists. To assume is to make an ass out of you and me when it comes to thinking something's safe.


"It is only with the heart that one sees rightly; what is essential is invisible to the eye."
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DJ4HEALTH's Photo DJ4HEALTH Posts: 41,422
10/23/10 9:10 P

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Don't go gluten free until the test. I have all the symptoms when I eat gluten but then go off and end up testing neg for gluten but if I eat wheat the all my symptoms come back.

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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MICHTOTMAN's Photo MICHTOTMAN Posts: 815
10/23/10 5:46 P

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Oh... and thanks for your input!

The greatest glory in living lies not in never falling, but in rising every time we fall.

NELSON MANDELA


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MICHTOTMAN's Photo MICHTOTMAN Posts: 815
10/23/10 5:37 P

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I am definately going in... I just didn't know if I should eat some bread/pizza/something with gluten before I go. I'm kinda scared to, frankly, because I'm not feeling great but I'm not feeling horribly bad either. But it's the weekend, and I've nothing planned tomorrow or Monday and my appointment is on Monday so maybe I'll see how bad I feel (or not feel?) and try a few items out to give them some extra input when I do go. Still considering...

The greatest glory in living lies not in never falling, but in rising every time we fall.

NELSON MANDELA


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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,941
10/23/10 2:30 P

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I tested positive 3 months after my first blood test. I was really trying hard too, but think a lot of it was cross contaminations. I also had the biopsy for confirmation.



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10/23/10 1:05 P

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I just met with a specialist this week as I have been sick for over a year with going into the hospital 3 times for severe dehydration and malnutrition. Finally after meeting with this specialist this past wednesday I am on a gluten free diet and feeling better. This doctor told me that this disease it hard to diagnose for certain as there are many false negative results. she did tell me that on an average it takes 11 years before someone is accurately diagnosed. She also told me that people with celiac disease are more prone to bacteria infections in the small intestines. I just came off of a round of one type of antibiotic for one of the bacteria overgrowth that I had and now have to wait two weeks before going on another round of different antibiotics to kill the other bacteria I have. Both of these bacteria were diagnosed by a breathing test. I am just so happy that I finally seem to have a diagnoses which they weren't able to do when I was in the hospital.
I do hope that you have a blood test that is accurate but remember you could still have it and have a false negative test. The one thing that is apparent to me is that just after 3 days of eating gluten free I feel like I have more energy and no pain in the gut. by the way even toothpaste has gluten as well as many lipsticks. I have done a ton of research on the internet. there is a ton of information out there and lists of gluten free foods and gluten foods.
Best of everything to you. Keep us posted.
Sallie

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JENCORINNE's Photo JENCORINNE Posts: 1,933
10/23/10 12:46 P

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I think at this time I'd just keep the food log. I know some people have tested negative after a week of being GF and others still positive 6 weeks after going GF.

You noted that you were type 1 diabetic and know that link. IBS is one of the diseases thats commonly misdiagnosed CD. I'm not a huge Elisabeth Hasselback(she has CD but was misdiagnosed with IBS for many years) but I like what she calls IBS "Dr speak for I don't know and Bull S#@$". Anxiety is also a CD symptom - I get it. Also CD is genetic so it makes sense that your brother and mother have it also.

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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,941
10/23/10 12:26 P

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Personally I wouldn't go completely GF until I see the Dr and get a blood test. I think keeping a food journal is wonderful, but I have learned a lot of Dr. don't know much about nutrition.



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SUN_CLAY's Photo SUN_CLAY Posts: 16,255
10/23/10 12:24 P

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I think you need to go in. If your doctor wants to test you for this, you will have to eat wheat again. You might actually have your answer then if you start feeling icky again when you eat it. I am not diagnosed with it, I have been gluten free for almost 4 years. this past year, both my sister and uncle were diagnosed with celiacs. So, that alone confirms that I probably do too, but I will not eat gluten just to find out. It is not worth it for me at this point.

just a side note, before my sister was diagnosed with celiacs, they told her it was IBS. IBS to me is a diagnoses when they don't know what else it is. They actually told her to eat lots of bread to relieve her stomach issues. then the test came back positive for celiacs. Funny, makes me think doctors really don't know.

~Melissa

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"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

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The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
MICHTOTMAN's Photo MICHTOTMAN Posts: 815
10/23/10 12:00 P

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I posted this same thing on another thread; I just wante do to make sure I get a quick response, so please forgive my not following protocol!

Hi! I just joined the group and have not been diagnosed with either gluten-intolerance or Celiac Disease but I have a sneaky suspicion that I have one or the other. And I'd like your advice.

For about the past year I have not been feeling well, but not bad enough to go to the doctor. I just felt "icky" a lot. Then, about 3 weeks ago it started getting worse. At one point I was proctoring an PSAT test and had to have a test administrator come relieve my class because I was so nauseous. At this point I started thinking that it wasn't a 3-week stomach virus and since the pain/nausea was significantly worse after I ate, it must be a food allergy of some sort. I decided to cut both dairy and wheat out of my diet for a while and seen what happened. In the mean time, my doctor said I should come in for a visit.

Because I was not well informed and because getting time off to go to the doctor is nearly impossible (I teach high school), I decided to make my appointment a week and a half later. Now - 10 days later - I am feeling better. Not great, just better than I had been. 2 weeks ago I would have said the pain/nausea fluxuated between 3-5. Now I'd say 1-3 (with 0 being none and 5 meaning that I was incapacitated). My appointment is in 2 days.

QUESTION: Should I keep up with what I'm doing (I've also been keeping a log for the past few days) and go in feeling 'eh'? or should I just eat gluten for 2 days so that I've got some in my system when I go in?

Other Interesting Notes - I'm a type 1 diabetic (I know the connection between type 1 diabetes and Celiac is high) and I've got hypothyroidism too (although well controlled through Synthroid). My brother and mother both have stomach issues although neither has been tested for Celiac or wheat allergies. My mom has never sought medical advice, but my brother has been treated for IBS as well as an anxiety disorder.


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