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Celiac Or Not Celiac?

Smitten

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Smitten Rookie
Smitten
Posted

I need help. I'm not sure what do do. My mom, sister, niece, uncle and cousin have been dx'd with Celiac. I have symtoms. My blood tests all came back negative but my endo biopsy came back that my villi were blunt. So, it suggest that I have it. My doctor is calling me back today to see what he wants me to do next. Anyone else out there that has been in this same siutation? Any suggestions will help! :)

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StrongerToday Enthusiast
StrongerToday
Posted

Are you doing a gluten-free diet? Is it helping?

mamaw Community Regular
mamaw
Posted

You didn't say if you are sick in any way? If it were me I would do the diet and see how I felt. You know some never have any outward issues.Maybe the gene testing would also help you decide and the blood work if you haven't done that yet.

good luck

mamaw

Sorry I reread and see that you already did the blood test. I've been having terrible brain fog lately...

mamaw

Smitten Rookie
Smitten
Posted
  • Author

I haven't started because I wanted to see how the results came back with first. I don't want to start if I don't know if I actually have it..... but may have to anyway to see if it makes a difference.

I do have bouts of diarrhea, hypothyroidism and have scaly, itchy patches all over my lower legs. I hate to admit that!!

julie5914 Contributor
julie5914
Posted

Interesting that your blood work would be normal and the biopsy abnormal. I would want to know what they tested in bloodwork, i.e., did they do the full panel. I had very pos. bloodwork, no endoscopy. My sister had inconclusive bloodwork and she only knows that they said the endoscopy saw that her intestines were inflamed. They never said celiac. So she is still on gluten. Let us know what your doc suggests.

Smitten Rookie
Smitten
Posted
  • Author

I believe they did an TTG, IGA, IGG & Endom??? antibody.......

key Contributor
key
Posted

If your villi are blunted, it sounds like you may definitely have celiac. Especially with the family history. Go to a dermatologist and have a biopsy of the rash on your legs. If you have it you should definitely stay gluten free. I am sure you would be happy to not have the rash and thyroid problems are very common with celiac.

THat is interesting that your blood tests were negative.

Monica

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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