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My Story

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Posted 25 November 2013 - 04:50 PM

Hi, first of all, excuse my English, I'm not a native English speaker..

Growing up, ive always been sick, even when i was a baby, i was alost addmitted due to bad nourishment. later on, i had frequent diarrhea, with vomiting and so much pain especially after lunch, i used to tell my teachers that my stomach hurt and they only said "go to the bathroom". Some years later (i think 8 years old) i developed some kind of joint pain in my ankles and my back, it was so bad that i couldnt walk! doctors didnt have a clue so anyone did anything, neither my parents. eventually the ┬┤pain went away some years later but i kept having the stomach stuff and i was losing weight, by 11 or 12 yr old i was very skinny!

when turned 15 my hair started to fall, i lost even more weight, my nails were (and are) brittle, i had dizziness every day all the time during 3 months + all the other stomach problems.

last year (16 years old) i started having very bad stomach aches and diarrhea everyday. i had diarrhea 10 times per day during 2 months, lost more weight, started noticing that i felt worse after i ate. i started having cramps in my legs and hands, developed acne and dermatitis, dizzines almost every day. I had diarrhea some moths and then constipation some months but never felt normal again. 

My gastro diagnosed me with IBS without any testing, i changed doctor like 4 or 5 times,. I started the gluten free diet, saw improvement and went back to the dr. and was finally tested for celiac disease. My biopsy showed some damage but not enough so i didnt get any diagnosis! i went back to eating gluten, got very very sick and went back on the gluten-free diet. My new doctor told me last week to stay gluten free and i had another biopsy (after 2 months gluten free but cheating so i hope i dont get a false negative!) im waiting for the results to come. I get symptoms when i get glutened but they're worse when i eat a sandwich (with normal bread) maybe because i cant stay gluten-free longer than a week without getting glutened!! i wonder if symptoms will get worse the longer i go gluten free, but i wont cheat anymore, the endoscopy doctor told me i may have problems with my gallbladder as well as celiac (anything was wrong with my gallbadder 5 months ago, my blood tests were ok) but i dont know. what if the endoscopy comes back negative again? why do i have problems with my gallbladder now if i dont have anything? i know gluten is my problem because i react when i eat it! i dont know what to do.


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Posted 25 November 2013 - 08:09 PM

I would suggest finishing your tests and go gluten free forever.  The final test for anyone here is whether the diet makes a difference in your life.  See you are very positive on that test!  You seem to be waivering for lack of diagnosis, so I hope your tests will be very definitive for you.  You see bad symptoms when you eat gluten and that will help you learn not to cheat or make any mistakes.  I hope you will soon be feeling better.



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Posted 26 November 2013 - 05:44 AM

It sounds like maybe the biopsy only showed minor damage because you were not ingesting much gluten at the time.  Also, the intestinal inflammation tends to come and go so sometimes you can get a negative biopsy but then 6 months later it can show very positive.  I agree with desperateLady - if going gluten-free makes you feel better, there's your diagnosis at this point.  But you have to go 100% gluten-free.  There is no half-way, no "sometimes" being gluten-free.  It's all or nothing.  Gluten is the devil for a person with Celiac - and it'll kill you if you keep eating it.

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Age: 44

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013



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Posted 26 November 2013 - 06:54 AM

Humans have 16-20 feet of small intestines.  Usually, the whole intestine isn't damaged.  So, Even if you have a lot of damage, 2 or 3 tiny biopsies may miss the damaged spots.  Also, eating gluten free will cause the intestines to heal and make it even harder to find damage.

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Posted 26 November 2013 - 07:11 AM

I would also add that many of your symptoms could be from Thyroid Disease and you should ask for those blood test too.



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Posted 26 November 2013 - 11:41 AM

I would also suggest going 100% gluten free regardless of your test results. I know that can be hard without a clear diagnosis, but for me it has made all the difference in the world to be totally strict about the diet all the time. I had been gluten-light for years and had many of the problems you mention, but my celiac tests were negative after a miserable gluten challenge. However, they only took four samples and did not take any from the duodenal bulb or do lymphocyte counts, which were the two things that my daughter's biopsy-confirmed celiac diagnosis was based on (if they'd tested her the same way they tested me, she would have gotten false negative results). I really don't know whether I have celiac with patchy damage that the biopsy missed, or non-celiac gluten intolerance. But either way, being gluten free has made such a tremendous difference that there's no way I'd go back! Going from a "gluten light" diet to a totally gluten-free diet had a much bigger effect on me than going from eating gluten daily to only eating it once or twice a week. Getting rid of that last little bit had a disproportionate effect!

I hope you get clear test results so that your decision is easy.

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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 



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Posted 28 November 2013 - 04:04 AM

Hi all, thank you very much for replying :)

I have an appointment with my doctor tomorrow, I'll ask her for the thyroid blood tests. What else should I ask her for? Does gallbladder damage show in blood tests too?

I'm now convinced I have a gluten problem, I know it since i ate that sandwich that almost killed me :o and decided to go 100% gluten free, but it's just too difficult because I don't live alone, and my family won't take me seriously unless I get doctor diagnosed.

Last week i argued with my sister and she said: "I'm going to use wheat flour now, let's see if you die" and I'm still sick from that glutening, had the D for 3 days now, along with other symptoms and I'm still angry with her, but anybody cares about me here, they say I'm nuts, so I need that celiac disease diagnosis.

I don't know what I'm gonna do if the biopsy comes back negative, I think I'll have to get sicker so the intestines get more damaged if I want a diagnosis, but (I think) my gallbladder problems are related to gluten and I don't want to get more diseases!

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