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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Confused About Test Results
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4 posts in this topic

I've been experiencing some Celiac-like symptoms for a while now and could use some help making sense of these test results.

 

Some history:

 

I had a partial thyroidectomy 13 years ago (benign Follicular Adenoma).  I take Synthroid 112 mcg daily.  About 3 years ago, I starting experiencing hair loss, which my doctor attributed this to my throid and increased my synthroid.  Then, I starting having numbness in my feet.  My endo was concerned and ran what seemed like a million tests to discover that I was Vitamin B12 deficient.  She told me to take OTC megadoses and then retested me to find I was still deficient.  She prescribed B12 injections.  The B12 seems to have stabilized, but still isn't ideal.  Then, she tested my Vitamin D and found I was severally deficient there.  OTC prescribed with no improvement.  Prescription Vitamin D (50,000 Iu) every 7 days and then retested.  I was still deficient and now my calcium was dangerously low, probably due to low D.  Continued with the Vitamin D megadoses and then retested-both D and Calcium dangerously low and now my TSH is out of whack.  The endo had me increase the D to 50,000 Iu every 5 days and add 600 mg of Calcium every night.  She said she won't increase my Synthroid because she doesn't think I'm absorbing it and then referred me to a GI.

 

I meet with the Gi who asks me about other symptoms.  I report heartburn, flipping between consitpation and diarrhea, gas and bloating...He orders the blood test below and schedules an EGD.

 

Immunoglobulin A, Qn, Serum
87 mg/dL (70-400)

 

Deamidated Gliadin Abs, IgA
2 units (0-19)
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

 

Deamidated Gliadin Abs, IgG
3 units (0-19)
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

 

t-Transglutaminase (tTG) IgA
<2 U/mL (0-3)
Negative 0 - 3
Weak Positive 4 - 10
Positive >10

t-Transglutaminase (tTG) IgG
<2 U/mL (0-5)
Negative 0 - 5
Weak Positive 6 - 9
Positive >9

 

Endomysial IgA  Negative

 

After the EGD, the GI tells me that I have esophagitis and a gastric ulcer.  They pulled tissue samples for a biopsy.  He started me on a PPI to heal the ulcer.  I heard from the nurse practitioner today, my biopsy results show lympohcytes indicative of early Celiac Disease but I have negative blood tests.  I return to the doctor this Wednesday.

 

Does anyone have any idea what this means?

   

 

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just what the NP said, early celiac.  Now, get yourself some Vitamin D3 at the grocery/vitamin store and take the same dose of that, that the doc prescribed.  Now, the B12, try finding the methyl- form, there are a few stores now carrying, if you don't find it, try on line.  A little sun every day is good as well.  good luck

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There are a few board members who had negative blood tests and a positive biopsy - that means it is celiac. For whatever reason, there was not enough autoantibodies in your blood to show up on the test, but you have the intestinal damage (which is what the tTG's EMA, and DGP's all test for).  Early cases of celiac disease often are serologically negative, that's why kids have a difficult time getting diagnosed - they haven't built up enough autoantibodies yet.

 

Low nutrient levels are a classic sign of celiac disease. You might want to take sublingual D and B since your intestines may not be properly absorbing it.

 

Good luck with your appointment. if for some reason the doctor says you don't have celiac (some docs want every test positive and all the planets and stars to align before they will diagnose) please try the gluten-free diet for a good 6 months. It takes a few a months for some symptoms to start improving.  Best wishes.

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Thanks for your help!  The GI said that because my villia are technically fine, in the absence of positive blood work he can't diagnose Celiac.  But, the vitamin deficiencies and intestinal symptoms were concerning to him.  His exact words were, "I may not be able to diagnose you, but if you were my daughter I would advise you to go gluten free."  What he's hoping is that a gluten free diet will help with the vitamin absorption.  He said he'll retest me again in a few months.

 

Now, to talk to the Endo about that Synthroid (which they apparently can't guarantee is gluten free)...

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    • Newbie: mother to coeliac kids
      Wonderful news to hear that he has finally had his testing done, and can go gluten free. I understand that he is afraid of needles. Most children are. It is great that the hospital have acknowledged his and your family's suffering. Hopefully now they will give him the A1 treatment that he deserves. I am really looking forward to hearing of his improvement, as no doubt he will come along in leaps and bounds. Children are remarkably resilient, and with any luck he will enjoy a healthy and bright future with adherence to his required diet. Way to go Mum, you have been through a lot, watching your boy suffer. I hope that you are handsomely rewarded with being able to watch him flourish now. Good luck with your older boy too. Keep us posted.
    • Newbie: mother to coeliac kids
      Well thank goodness the gluten eating is over for him now & he can begin the journey back to good health! Poor fella. He was so sick! Just a heads up --- he isn't going to feel better instantly but at least he's a kid & they heal faster as a general rule. Bone broth!!!! Yaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyy mom! That's really going to help him!   Do I recall correctly that you still have the 17 yr. old to go through testing yet?
    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
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