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Attempt To Get Diagnosis Or Self-Diagnose?

Emsstacey

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Emsstacey Rookie
Emsstacey
Posted

I have a long, suggestive history of celiac. Lifelong difficulty gaining weight, mouth sores, lactose intolerance, ITP, anemia, family history, and gi symptoms. About 12 years ago had a scope looking for "malabsorption", celiac never mentioned. I don't remember any biopsies taken, the dr just told me afterwards that it looked fine. Fast forward to two years ago, started feeling awful with extreme fatique, body/joint aches, repeated shingles, nonstop mouth sores and osteopenia and extremely low vit d. My dr ran a celiac panel and everything came back negative except for a high deamidated gliadin peptide. I was told that it was not suggestive of celiac but I could see a GI if I really wanted to. I was sick of dr's and opted not to press it.

Now, I wonder every day whether I do in fact have celiac. I have attended a gluten free support group and noone in the group has had good luck with the local dr's. I would like to have an official diagnosis buti have been afraid of wasting my time with dr's who aren't up to date. I have been following the new research on the DGP test and it sounds very accurate and sensitive... Coupled with family history of celiac and many autoimmune diseases and my own suggestive history... It sounds unlikely that I don't have gluten issues.

I would love your opinons on whether I am foolish to self diagnose and forego a formal diagnosis? It seems so often that we have to take our health in our own hands anyways... Why not now?

Thank you!

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DebbieM Rookie
DebbieM
Posted

I really don't know what to tell you except I am in the same boat. Although, I have seen a GI and had an edoscopy that told me I was "suggestive of mild/early celiac".My blood work was negative, but I did test positive for both the celiac genes on the DNA tests. SO...same here....do I just "self diagnosis" or keep trying for a more firm diagnosis. In my heart of hearts, I KNOW (and have been told by so many) I should just go gluten free and call it a day and I know I eventually will. BUT...I really want to know 100% if I have celiac. I was gluten free for 9mos (then did a 3 month gluten challenge before my test) and I am happy to back to that diet, but if I have celiac I will be so much more diligent and never cheat and I will be more watchful with my children. My doctor did not see "enough" to make an official diagnosis, but rather wants me to continue eating gluten for 3 more months and do the biopsy again. I don't know what to do....

Best of Luck....

Debbie

ciavyn Contributor
ciavyn
Posted

If you do a search on here, you'll find a number of threads on this topic. It's a tough call. I'm self-diagnosed, do not have any biological children, and am an adult. I do not need a doctor's excuse for anything, and my dr's are perfectly content to put gluten-free on my chart. I don't have the money nor the inclination to be sick for 3 months. So that is how I look at it. But it is your choice, and you'll have to decide what it is worth. More than anything, I just want to feel healthy. :)

Emsstacey Rookie
Emsstacey
Posted
  • Author

Thank you for your responses! I guess that I have either learned to live with my main symptoms or they just aren't that bad... that the diet doesn't make a huge difference noticeable. Of course, I have only gone 1 month at best. I do live with a lot of fatigue that I would expect to get better as well as general gas/bloating.

What makes me most worried is that if I have a more silent celiac-- then I am continuing to damage my bones as well as other issues. I was shocked to have mild osteopenia at 30 years old as well as a vitamin d level of 18. I also have had shingles every couple of years and I'm just not sure that if my immune system was not battling something like gluten-- that I would have already been dealing with such things.

Anyways, I think I know my answer, but it's so hard to commit when I don't get a pretty quick "sickness" from what I eat. It would be easier if I ran to the bathroom immediately and knew for sure even without an official diagnosis.

jackay Enthusiast
jackay
Posted

Thank you for your responses! I guess that I have either learned to live with my main symptoms or they just aren't that bad... that the diet doesn't make a huge difference noticeable. Of course, I have only gone 1 month at best. I do live with a lot of fatigue that I would expect to get better as well as general gas/bloating.

I suggest you stick with a gluten free diet longer. I have been completely gluten free for five months now. My anxiety went away as soon as I was careful to not get cross-contaminated. Other issues did not go away until I went on a combined elimination and candida diet. I also started a candida supplement. I still suffer from fatigue and lots of gas. The fatigue is getting better as time goes on. My doctor feels that the gas will go away with more healing and changing the strain of probiotics I use.

Foods other than gluten may be causing your fatigue and gas/bloating, as was my case.

I was diagnosed gluten intolerant but did not have the blood tests for Celiac until after I had eliminated gluten from my diet. There is no way I'd add gluten back just for additional testing. I know what I can and cannot eat and that is enough for me. Although I am a bit older than you, I also had osteopenia and low Vitamin D level. My Vitamin D level is now where it should be with taking supplements. I haven't had a repeat dexa scan yet but I do expect that the osteopenia is getting better since I eliminated gluten.

Emsstacey Rookie
Emsstacey
Posted
  • Author

I wanted to update with a response I received today from Vikki Petersen, author of The Gluten Effect.

I am not very familiar with her but signed up for her virtual book tour after seeing it advertised on the Pamela's facebook page. My question can be viewed here on her blog: www.glutendoctors.blogspot.com. I asked about what to do next after being positive for deamidated gliadin antibody and having my doctor not find it significant. She said that she found it very concerning and that I should have been told that my positive deamidated gliadin is an early marker for celiac and I should have been advised to remove gluten from my diet.

It is very nice to finally have someone give me a direct answer, although... I'd rather hear that I can eat whatever I want and not worry about it. ;) Deep down, I know this is what is best for me. I think at this point, living in a rural area with limited knowledgeable professionals on celiac and gluten intolerance-- I am going to go ahead and cut out gluten without worrying about a diagnosis. I hope that I don't second guess myself again in the future. If so, I will probably pursue genetic testing.

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      Son's legs shaking

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