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ceceliac

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ceceliac Apprentice
ceceliac
Posted

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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1desperateladysaved Proficient
1desperateladysaved
Posted

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.

 

D

NoGlutenCooties Contributor
NoGlutenCooties
Posted

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.

kareng Grand Master
kareng
Posted

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.

GF Lover Rising Star
GF Lover
Posted

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

 

Colleen

greenbeanie Enthusiast
greenbeanie
Posted

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.

ceceliac Apprentice
ceceliac
Posted
  • Author

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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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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