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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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    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

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    • RMJ
      Outgrow celiac?

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    • knitty kitty
      Outgrow celiac?

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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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