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Tests For Celiac

jenny2

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jenny2 Rookie
jenny2
Posted

hello. i am having alot of problems with weight loss, diarrhea, and the list goes on and on. my doc gave me the celiac genetic test ( unsure of name) and it came back positive. he has since ordered a colonscopy which was normal and a small bowell follow up for next week. will the small bowell follow up show the damage in the small intestine? in 2004 i had a postive endoscopy with flat villi of the small intestine but all blood work was negative and they told me that i didnt have celiac because of the blood. now i am having problems again and just want to find out if i have celiac disease once and for all. thanks for the help..

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you had flattened villi chances are really high you have celiac and your blood tests were a false negative. Have they run the blood tests again? You could be positive by now if you continued to eat gluten. What you need is another endo to see if your villi are still flattened as the other tests wouldn't show the damage.

After all your celiac related testing is done it would be a very good idea to get started on the diet strictly.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood work came back negatice for Celiac, but the endoscope showed flattened villi. The GI specialist said it was Celiac Sprue.

There's about 30% of us that have normal blood work but have Celiac disease. I'm surprised you didn't get a DX in 2004 with your first endoscope! :o

I really wish Dr.s would learn more about the disease so they can DX sooner, saving people from additional damage to their bodies.

Good luck to you!

jenny2 Rookie
jenny2
Posted
  • Author

my doctor wants to run a small bowell follow thru. how do i get him to run a endoscopy? should i call them and ask them why they are not running a endo on me? I will not see the doctor again for awhile, he is going to wait till the results from the biopsy of the colonscopy and the small bowell come in.

ravenwoodglass Mentor
ravenwoodglass
Posted

my doctor wants to run a small bowell follow thru. how do i get him to run a endoscopy? should i call them and ask them why they are not running a endo on me? I will not see the doctor again for awhile, he is going to wait till the results from the biopsy of the colonscopy and the small bowell come in.

Whether you choose to do more testing or not is entirely up to you and with your past positive endo and recovery on the diet some doctors would give you the 'official' diagnosis if you need one any reason. If you do need to have more testing you might request that they run a full celiac panel on you first thing. Just because you were negative before doesn't mean you are now and make sure they test your total IGA and that they do the newest test the DGP in addition to the others. Then you could wait on those results before you do more testing. If it is positive then your doctor will likely agree to redo an endo and I would tell them I wanted that done first or just skip it and get on the diet. You also have the option of getting the full records from the last endo with the flattened villi and get a second opinion. You may find the second opinion guy considers you diagnosed.

No matter what happens with the doctors when all your celiac related testing is done do give the diet a good strict try.

jenny2 Rookie
jenny2
Posted
  • Author

i am going to get my medical records from 2004 today when the doc that did the endoscope told me that i had flat villi and looked like celiac disease. i am going to send them to my new gastro with the hope that he will do another endoscope on me. i understand why he did the colonscopy and has ordered a small bowell follow thru but at the same time i would like to have the endoscope done again because from what i am reading they say that is the gold standard of diagnosis? i need to get this straighten out once and for all, i know that there is something wrong with me because of the extreme weight loss of 25 pounds in 1 and half months. in 2004 when they found celiac with the endoscope i had lost 30 pounds in 2 months.

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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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