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Is It Really Celiac's?

Now I know

By Now I know
in Coping with Celiac Disease

Recommended Posts

Now I know Newbie
Now I know
Posted

Hi All~

I was recently (this week) diagnosed with Celiac's. However, after reading so many posts in here I wonder if I was misdiagnosed!! I don't/haven't had all the sypmtoms that you guys have had. Mine started about a year ago of just instant diahrrea after eating, sometimes not. Little cramping, little gas, no bloating. The dr. did a biopsy of small intestine and blood work. I wonder if she diagnosed this because she didn't know what else it could be. Should I get a second opinion? If that is different...then what???? LOL

Thanks for the help!!!

L.

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happygirl Collaborator
happygirl
Posted

If you were diagnosed by biopsy, then you have Celiac. There can be a range of presentations...from a silent Celiac (no symptoms) to someone who is debilitated by symptoms. Most people fall somewhere in the middle, but with varying symptoms. There isn't "one" type of Celiac.

Here are some good sites for reading:

www.celiac.com

Open Original Shared Link

www.celiacdiseasecenter.columbia.edu

www.celiaccenter.org

Misdiagnosis usually happens the other way, i.e., someone has it but it isn't recognized. Celiac damage is pretty specific to Celiac, so if you have the signs of it, you have it. The biopsy is the "gold standard" for a Celiac diagnosis.

elye Community Regular
elye
Posted

I was one of those silent celiacs before diagnosis, i.e., I had no noticeable symptoms with the exception of low iron. Quite amazing, really, that I was diagnosed at all, considering that the average celiac waits eleven years for a correct diagnosis, and many of them have very obvious, often debilitating symptoms!

If they've found the antibodies in your blood, then you're celiac. The blood panel rules the condition in if positive (it doesn't rule it out if negative, however...but that's another whole post!)

Welcome to the board! :)

babygirl1234 Rookie
babygirl1234
Posted

it toke a year before i was DX i started with really bad stomach pains the doctor though i was crazy was ammited off and on in the hosp they though i was making it up, and fanilly my mom went to my ped doctor after a whole yr of being amitted being told i was faking it she fanilly got them to refe me to a GI doctor they did a snono for galstones then they did the enogscope and bi thats how they found out that i had celiac disease and after my bday i went gluten-free and this past yr i went back to having stomach pains everytime i ate the D, went to the doctor was amitted for 14 days did tests all came back fine, went for the both scopes showed that it was my celiac disease acting up, it toke all those years i hardly cheated maybe once a year, nope not doing it anymore because if i do i get bad stomach pains and feel like tossing my cookies,

Now I know Newbie
Now I know
Posted
  • Author
If you were diagnosed by biopsy, then you have Celiac. There can be a range of presentations...from a silent Celiac (no symptoms) to someone who is debilitated by symptoms. Most people fall somewhere in the middle, but with varying symptoms. There isn't "one" type of Celiac.

Here are some good sites for reading:

www.celiac.com

Open Original Shared Link

www.celiacdiseasecenter.columbia.edu

www.celiaccenter.org

Misdiagnosis usually happens the other way, i.e., someone has it but it isn't recognized. Celiac damage is pretty specific to Celiac, so if you have the signs of it, you have it. The biopsy is the "gold standard" for a Celiac diagnosis.

Well! That definately clears that up!!!! Thanks for taking the time to respond! Going shopping today for books and info. Good day!

happygirl Collaborator
happygirl
Posted

Pick up Dr. Green's book....its awesome!!!!

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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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