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Blood Test Results & Experience


mslew10
Go to solution Solved by trents,

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mslew10 Newbie

Hi all! I've been lurking on the forums for a few days, but this is my first post! 🙂 So excited to have found ya'll!

I just got my bloodwork back and would love some feedback. My dad has confirmed Celiac and I have had gastro symptoms, low b12, and an on and off itchy rash (diagnosed as something different by everyone who looked at it) for several years. I also have one copy of HLA-DQ2. I've started to slowly remove gluten from my diet, but not completely. I just had bloodwork done last week - which I should have had before I started to decrease gluten consumption - and my results are below. I've seen so many different limits of what a "normal" value for ttg IGA is and am trying to decide what to do from here. Any and all feedback welcome! My primary care doctor didn't really think I needed any additional information, but since you've all been through it, I wanted to see what your thoughts are. Thank you!

tTg-IgA: 8.2 mg/dL

IgA: 113 mg/dL


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trents Grand Master

Welcome to the forum community @mslew10!

The reason you have run across so many different "normal" values for the tTG-IGA is that there is no industry standard and each lab develops there own tests and their own scales. So, the values you posted are not helpful to us unless you also post the scale used by the lab that analyzed the blood sample. The second test you post, the IgA at 113 is not a test for celiac disease per se but a measure of what we call total IGA. If total IGA is lower than normal then a person is IGA deficient and this will result in a negative skew to individual IGA antibody scores, except perhaps the DGP-IGA.

To get valid test results you would need to go back to eating generous amounts of gluten (10gm daily, the equivalent of about 4-6 slices of bread) for three weeks or more.

mslew10 Newbie

Thanks @trents! The scale for this test said that 15 was the threshold for abnormal, so maybe I'm in the clear. Appreciate your speedy response! I wasn't aware that every lab has their own scale, that's pretty wild!

  • Solution
trents Grand Master

I certainly would not conclude that you are in the clear. There is a big question mark about whether or not you are consuming enough gluten to render valid test results. In addition, you have a family history of celiac disease, you have symptoms and you have genetic potential. A couple of recent studies done with larger groups, one of them was done by the Mayo Clinic, found that >40% of first degree relatives of those with confirmed celiac disease were found to have celiac disease when tested.

IMO, your next logical step would be to undertake a proper gluten challenge and then get retested with a full celiac panel, not just the total IGA and the tTG-IGA tests. This would include the DGP-IGA the DGP-IGG tests.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease and shares many of the same symptoms. There is no test for it available, however. Celiac disease must first be ruled out. Some experts believe NCGS can be a precursor to developing celiac disease.

Scott Adams Grand Master

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:

 

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      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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