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Awaiting Diagnosis
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3 posts in this topic

Good Afternoon,

I am awaiting the results of the blood tests my doctor ran yesterday.

I am 48 years old, and have always, always felt just awful all the time. Tired, achy, tummy issues. The recent event that brought me back to the doctor is a horrible need to scratch my entire body, between my toes, EVERYWHERE. Intense chest pain (the esopheogus), nausea, vertigo, constant numbness in my fingers and vomiting.

My PCM was not in on the day I went in, sub doctor ran blood work (told me I was his mystery patient of the month, gotta love that one).

First result back was an elevated white count >17K. He treated me with prednisone, thought that would help the itching.

Finally got to see my doctor yesterday. He looked at all the results and told me my B-12 was very low (132). "You have the B-12 of a hard-core vegan" were his exact words. After looking at the history and more of the blood work, he is fairly certain it is Celiac.

Anyhow, he sent me for the antibody blood test last night and I am awaiting the results today. He is also giving me a B-12 shot to try to get the level up.

Just checking in to see if my story sounds familiar to anyone here. I will post the results to the antibody blood work as soon as I have them.

I honestly hope that it is Celiac and I have something to work with and not live my life not know why I never, ever feel well.

So glad I found your group!

Pam

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Welcome to the board, Pam, and congratulations on finding someone willing to check for celiac - not always an easy task. It may take a day or two (or three) for the results to come in depending on what he ordered and your location. When you do get them, we would love to take a look. Be sure to ask for a print-out for yourself (you should do this with all your lab work) and keep a file you can refer to. There's no reason why your doctor should have the only medical file on you. If you care to share your results, be sure to give the test name, your score, and the lab ranges. There are people on this board who are pretty expert in interpreting lab tests :)

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Hi Pam,

Sorry to hear that you have been so unwell, your symptoms and clinical presentation definitely do match celiac as a possibility, it is important to tackle each issue full hand in order to get an accurate diagnosis or exclusion, celiac needs a close look to not get misdiagnosed. Please give us all results including the test name, your number, and negative range. Hopefully your doctor knows which tests to do but in the event he does not, these are the tests that need to be completed in full (not some, all) to get an accurate picture:

Total serum IgA- This has nothing to do with celiac however if you are low in this than all of your IgA based tests will likely be false negative

Deamidated Gliadin IgA- In IgA sufficiency this is the most accurate test on your body's response to gluten ingestion, if this is positive your body is having a negative reaction to the consumption.

Deamidated Gliadin IgA- Similar to it's IgA counterpart but particularly useful if you are IgA deficient.

Tissue Transglutaminase Ab- This is a marker of damage, if this is elevated your intestines are damaged and celiac is most likely the cause (about 95-98 percent specific to celiac)

Endomysial Ab- Another marker of damage that is extremely specific to celiac

In the event you are missing some of these tests when you get your results back make sure to push the doctor to get them, too many people get misdiagnosed because of only one or two being tested.

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
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