Help - What Should My Next Move Be...?

[ericalina]

Hello!

I will try to be brief as I am sure that everyone has a long story to tell and I don't want to waste anyone's time!

I am a 30 year old female with no children. I have always been very skinny, and currently hover between 104-107 lbs. Gaining weight has been virtually impossible for me my entire life, but I've never had a huge appetite. The only time I've been able to gain any weight was while on anti-depressants.

Back in 2002-2003 I went through a bad breakup, was unhappy with my job, and was feeling anxious in general post 9-11. I began having a lot of cramping, diarrhea, having to go the bathroom quickly, etc. I have always been on the gassy side, and it only got worse. I thought I was lactose intolerant but the symptoms didn't seem to be only dairy-related and didn't always happen when I ate dairy. I was always the MOST regular person (firm stool, no bathroom issues to speak of, could eat anything)but after the tumult, I never went back to normal.

So I visited my doctor who ran a few blood tests (this is still 2003) - she let me know that she ran an antibody test and that my antigliadin antibody level was elevated (The IgG # - I believe 58 if I am reading my paperwork correctly). She sent me to a gastroenterologist who said that, had I only presented with my symptoms and no blood test, he would have pegged me as classic IBS. However the blood test results made him do a biopsy/endoscopy to check for celiac, which came back negative.

Being young and kind of naive, I thought, well great, I don't have celiac and I was thrilled. However, since 2003 I have only begun to feel worse and worse. I never have solid BMs (they get better with more fiber/Citrucel in my diet, but solid would be pushing it). I have insane allergies to just about everything (dust, mold, all pollens, etc.) I began developing oral alllergies to things I had eaten my whole life (sesame, apples, etc.). I also began getting migraines that I thought were menstrual cycle related. In 2007 I began getting sinus infections and sinus pain. I had never gotten these kind of infections and now I have had apx. 6 since 2007. I constantly feel lethargic, and get a lot of headaches, which most doctors attribute to the allergies. I struggle with depression and anxiety off and on. I was diagnosed with asthma at age 18 but it is worse now (though I am treating that relatively successfully). I am still 105 lbs, the same weight I was when I had my biopsy/endoscopy.

So today, after being put on antibiotics for the third time in the past 6 months and a countless time since 2007, I really hit bottom. I googled more and found out that perhaps my IgG of 58 might indicate that I do in fact have celiac. It would certainly explain a lot. As scary as it might be to be diagnosed as such, it might also be a relief. I just don't know what to do next. I feel let down by my doctors (I still see the same regular doctor; have not seen the gastroenterologist since the biopsy results), but also by my 23 year old self who maybe didn't want to pursue the results any further.

I have a general yearly physical 6/9, but I would love to go gluten free asap to see how I feel. However I know that would be counterproductive to any blood testing I could get then. What do you think? Celiac? No? I am just so tired of feeling awful.

Thanks for reading this far - it is greatly appreciated.

Erica

[lizard00]

Hi and welcome to the forum!

If it were me, (knowing what I know now) I would wait it out until your appt in June and have the blood work done again. Your high IgG is not as specific as some of the other tests for celiac, but it does indicate that something is going on. It also sounds like you developed symptoms pretty quickly after the traumatic events in your life. I believe, as do others here, that often we feel sick due to celiac long before blood work can tell what's going on. So, maybe 7 years ago, you didn't have enough damage done for a blood test to pick up, but perhaps by now you do, and further testing would be good.

Have them do the full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Hope you get some answers!!

[lizajane]

i would just go gluten free and see if you feel better. who cares what your doctor says if YOU KNOW that you feel better without it? you can always go gluten free and then later challenge yourself by eating gluten to see if you react adversely. personally, i don't want to challenge myself because it is VERY clear to me that gluten hurts me. i think most folks here would say the same, definitive diagnosis or not.

i do have a diagnosis- i have lymphocytes in my small intestine and responded immediately to the gluten-free diet. so my GI said no doubt about it, i MUST be gluten free. but my son had negative blood work and we still took him off gluten. it changed him within 3 days and when he has been accidentally exposed (he is 4 so it is hard!) he has been a real nightmare the next day! so i don't need a diagnosis for him. it makes him feel bad. period. that is all that matters.

[ravenwoodglass]

Call your doctors office tommorrow morning and ask to speak to the nurse. Tell her that you want to get the celiac panel drawn. If possible have them also run iron, B12. Your doctor can call in the order or you can pick it up. Then go get the blood drawn and ask the lab to also send the results to you. You will just have to sign a release. You should have the test results before you see the doctor. If you don't want another biopsy done, (they do have a high rate of false negatives but with a few more years damage they might find it now), then go ahead and go gluten-free after the blood draw.

[lizard00]

Call your doctors office tommorrow morning and ask to speak to the nurse. Tell her that you want to get the celiac panel drawn. If possible have them also run iron, B12.

I like this idea better than my own.

At any rate, please do at least get the blood work done. It makes things a lot easier down the road... I went gluten-free before I had blood work done and went through a lot of frustration and a few doctors telling me that I couldn't possibly have celiac.

[ericalina]

thanks, everyone, for the feedback so far! i will try to get a blood test drawn in the next week or so (probably after this weekend) and then go from there...worst case scenario, i know i am having blood drawn on 6/9.

can anyone shed any light for me on what it means to have a 58(?) IgG? what should it be? can it be much higher for some people? if i do in fact have celiac i am not surprised that the biopsy came back negative, as i hadn't been having symptoms for very long and i had literally zero bowel/intestinal symptoms beforehand. I went from no issues to about a million overnight it seems.

thanks again for responding - i am looking forward to learning more. thanks!

[ravenwoodglass]

thanks, everyone, for the feedback so far! i will try to get a blood test drawn in the next week or so (probably after this weekend) and then go from there...worst case scenario, i know i am having blood drawn on 6/9.

can anyone shed any light for me on what it means to have a 58(?) IgG? what should it be? can it be much higher for some people? if i do in fact have celiac i am not surprised that the biopsy came back negative, as i hadn't been having symptoms for very long and i had literally zero bowel/intestinal symptoms beforehand. I went from no issues to about a million overnight it seems.

thanks again for responding - i am looking forward to learning more. thanks!

The 58 means that you were positive for celiac antibodies. That is why the GI had this response " had I only presented with my symptoms and no blood test, he would have pegged me as classic IBS. However the blood test results made him do a biopsy/endoscopy to check for celiac". There is a good chance the biopsy was a false negative.