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Help With Celiac Diagnosis Issues

KimKF

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KimKF Apprentice
KimKF
Posted

Daughter has had gastro issues for years! She has also been diagnosed with Hoshimoto's Thyroiditis (know there is a correlation between that and Celiac). We are in the beginning stages of having her tested for Celiac, as she has had diarrhea issues for the past 2 weeks. Diarrhea 10 to 15 times a day, very fatty. She just had blood drawn for Celiac Panel, Ultrasound tomorrow, GI Doctor on Friday. In the case that this is Celiac, to be safe, she has gone completely Gluten Free. How long would it take for her to see some relief. It's been 2 to 3 days so far with no let up with the constant diarrhea?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Please get her back on gluten. She needs to be on a normal gluten diet for testing for the best chance of an accurate result. While you are waiting for the testing spend as much time here as you can reading about all that you need to do to insure that she is completely gluten free. As soon as the tests are done she can give the diet a good strict try. There are false negatives with both blood and biopsy so give the diet a couple of months. I would make sure that the doctor does stool testing to make sure she hasn't picked up something like salmonella or the like also.

KimKF Apprentice
KimKF
Posted
  • Author

Please get her back on gluten. She needs to be on a normal gluten diet for testing for the best chance of an accurate result. While you are waiting for the testing spend as much time here as you can reading about all that you need to do to insure that she is completely gluten free. As soon as the tests are done she can give the diet a good strict try. There are false negatives with both blood and biopsy so give the diet a couple of months. I would make sure that the doctor does stool testing to make sure she hasn't picked up something like salmonella or the like also.

They took blood while she was still on gluten. She was hoping to be able to subdue the constant diarrhea by changing it after, just in case. Hasn't eaten much in two weeks, and doesn't feel like it, so it wouldn't matter anyway.

Skylark Collaborator
Skylark
Posted

You give up the chance for a subsequent biopsy if she's off gluten. Normal response time for diarrhea to go away gluten-free is 1-2 weeks. Raven's right that this sudden onset sounds more like Giardia, Salmonella, or some other GI infection though.

KimKF Apprentice
KimKF
Posted
  • Author

Thanks for the help! She has given a stool sample and has had the blood test (no results yet after 2 days!). She is back eating gluten to prepare for further testing (which I only learned here). Given her history of in and out of every doctor and emergency room over the years, only to be told she has gastroenteritis or IBS (with no proof) and leading her to think it was all in her head or that she caused it all. She has had acute appendicitis (removal) at 17, depression, hair loss, insomnia, fatty stools, OH... and diagnosed 3 months ago with Hashimoto's Thyroiditis. I'm not leaning the Giardia or Salmonella route. But, good to make note of it and I am sure they are checking her stools for it. With ultrasound tomorrow, and GI Celiac specialist on Friday, we will hopefully rule in or out the culprit in time. Interesting how the only reason we are investigating this course is upon our own accord. Are the doctors good, but have a narrow scope, or are they poor and lack initiative?

KimKF Apprentice
KimKF
Posted
  • Author

Yikes! Back on Gluten yesterday and today and stomach is worse than before! What does that say?

Skylark Collaborator
Skylark
Posted

Yikes! Back on Gluten yesterday and today and stomach is worse than before! What does that say?

That your hunch is probably right? Any word on the celiac panel results?

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KimKF Apprentice
KimKF
Posted
  • Author

That your hunch is probably right? Any word on the celiac panel results?

No results on that or the stool sample done on Monday. Does it really take that long? Not that I am confident that it will come back definitive. However, today was a pretty good indication that we are in the right neck of the woods.

ravenwoodglass Mentor
ravenwoodglass
Posted

No results on that or the stool sample done on Monday. Does it really take that long? Not that I am confident that it will come back definitive. However, today was a pretty good indication that we are in the right neck of the woods.

I agree. As I said in my other response if she can take Pepto Bismal Liquid it may help the pain. It can darken the stool and do tell the doctor she took it if she does.

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    • trents
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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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