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A Possible Answer

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goodnews Apprentice
goodnews
Posted

I have been feeling sick forever and a few months ago they did a blood test to check for Celiac, which came back negative. Then recently they did an endoscopy. I wasn't really sure what they were testing for, didn't really even think it was for Celiac at all. They told me after the procedure that everything looked good but that they did 3 biopsies (one of the duodendum, one of the esophagus, and one of the stomach lining). Then today the dr. office called me and said that the doctor wanted to see me on Monday. She said that they got the biopsy results back and that the results "suggest that you may have celiac disease" She is not a nurse and couldn't tell me on the phone. So now I have to wait until Monday. Of course my brain is already going and I am almost certain she is going to say that is what it is...and I have been googling everything like crazy and driving myself nuts. But some of the weird symptoms I have had seem to be symptoms and it all seems to make sense now. Anyhow, so what she said probably suggests I have it, doesn't it? My husband says "you never know...she didn't say you have it or anything." Ugh...

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mushroom Proficient
mushroom
Posted

I am sorry that you are going to have to spend the weekend on tenterhooks awaiting your appointment on Monday. Oftentimes the results of a biopsy are not truly definitive, but are indicative, meaning that it is quite possible that you either have it or are in the early stages of developing it. I think if I were you I would prepare myself for the possibility that the doctor will recommend that you start a gluten free diet. If I were to receive that kind of result, I would not wait until I developed a full-blown case, with some possibly other nasty authoimune disease to go along with it; I would start the diet right away. But wait to hear what the doctor has to say, while being prepared that that will be it.

goodnews Apprentice
goodnews
Posted
  • Author

I am sorry that you are going to have to spend the weekend on tenterhooks awaiting your appointment on Monday. Oftentimes the results of a biopsy are not truly definitive, but are indicative, meaning that it is quite possible that you either have it or are in the early stages of developing it. I think if I were you I would prepare myself for the possibility that the doctor will recommend that you start a gluten free diet. If I were to receive that kind of result, I would not wait until I developed a full-blown case, with some possibly other nasty authoimune disease to go along with it; I would start the diet right away. But wait to hear what the doctor has to say, while being prepared that that will be it.

Thanks! I guess only time will tell...but I did some research though so I am mentally prepared for when the doctor tells me. What is more concerning to me is that I think my 3yo daughter may have this. She is on the smaller side and has real problems with constipation and has had bouts of diahrhea and no real appetite. Her stomach is upset a lot and a few times she has been to the bathroom and has had fat deposits float up to the top. It would be a big challenge for her because she is a very picky eater. She does like her fruits and veggies some, but she practically lives off of pasta and crackers. Thankfully she likes rice. Anyhow, if they do say it's positive I will need to get her tested too. Probably test my son as well but he has no symptoms.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks! I guess only time will tell...but I did some research though so I am mentally prepared for when the doctor tells me. What is more concerning to me is that I think my 3yo daughter may have this. She is on the smaller side and has real problems with constipation and has had bouts of diahrhea and no real appetite. Her stomach is upset a lot and a few times she has been to the bathroom and has had fat deposits float up to the top. It would be a big challenge for her because she is a very picky eater. She does like her fruits and veggies some, but she practically lives off of pasta and crackers. Thankfully she likes rice. Anyhow, if they do say it's positive I will need to get her tested too. Probably test my son as well but he has no symptoms.

I would ask them to test at least your daughter now no matter what your test results. Some of us do become addicted to gluten and that might be what is causing her strong preference for gluten foods. After everyone is done with testing you might want to make the whole house gluten free at least for a while to see if it helps.

jasmine75 Newbie
jasmine75
Posted

I think you may also find that it's not as difficult as you think. The hard part is learning where possible contamination sources may be but as far as feeling restricted, I don't at all. There are so many gluten free things out there that taste quite good and my guess is she wouldn't know the difference. It definitely takes a learning curve. I've just started myself. I thought it would be more difficult. It may become tougher as I test for other allergies but wheat/gluten alone isn't bad at all. Good luck. You may find getting your husband on board will be the toughest battle. :)

salexander421 Enthusiast
salexander421
Posted

I think my 3yo daughter may have this. She is on the smaller side and has real problems with constipation and has had bouts of diahrhea and no real appetite. Her stomach is upset a lot and a few times she has been to the bathroom and has had fat deposits float up to the top. It would be a big challenge for her because she is a very picky eater. She does like her fruits and veggies some, but she practically lives off of pasta and crackers. Thankfully she likes rice.

It's funny, my daughter was a very picky eater before going gluten free and she too could live on pasta and crackers. She is WAY less picky on a gluten free diet. I think it probably has to do with her tummy feeling better. I think too that when you crave gluten foods like that it is an indication that there is a problem with the particular food and a lot of times you'll go through withdrawals after removing it from your diet. There are plenty of kid friendly gluten alternatives out there and you may find that she adapts very easily, even more so than many adults. Hope everything turns out good for you! :)

cyberprof Enthusiast
cyberprof
Posted

I have been feeling sick forever and a few months ago they did a blood test to check for Celiac, which came back negative. Then recently they did an endoscopy. I wasn't really sure what they were testing for, didn't really even think it was for Celiac at all. They told me after the procedure that everything looked good but that they did 3 biopsies (one of the duodendum, one of the esophagus, and one of the stomach lining). Then today the dr. office called me and said that the doctor wanted to see me on Monday. She said that they got the biopsy results back and that the results "suggest that you may have celiac disease" She is not a nurse and couldn't tell me on the phone. So now I have to wait until Monday. Of course my brain is already going and I am almost certain she is going to say that is what it is...and I have been googling everything like crazy and driving myself nuts. But some of the weird symptoms I have had seem to be symptoms and it all seems to make sense now. Anyhow, so what she said probably suggests I have it, doesn't it? My husband says "you never know...she didn't say you have it or anything." Ugh...

Your story is somewhat like how I was diagnosed. I had the biopsy first - to look for an ulcer - and they looked at the biopsy results and saw celiac. My blood test was negative...an all-too-common experience.

And speaking as a parent who had a kid sick with probable celiac until he was 15, your daughter will be lucky if it prevents/clears up any problems. Taking a 3yo gluten-free is much easier than convincing a teen or pre-teen. The saddest moment for me as a mom was to learn that my 15yo experienced pain every time he ate and thought it was normal: It was only after he stopped eating gluten that he said "I didn't know that eating wasn't supposed to hurt."

I'll cross my fingers for you that if you take her gluten-free, that she'll be happier and healthier for the rest of her childhood. Good luck!

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    • trents
      how much gluten do I need to eat before blood tests?

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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