[aderifield]

Originally Posted by darlindeb25

Who can know for sure? I don't think enough is known about celiac disease yet. People with DH are celiac, and they often times do not have flattened villi...how do we explain that?

If I were you, I would request a celiac panel be done. This will give you your IGG and IGA levels, plus your gene makeup and blood work. This could help you make up your mind too.

A gluten free diet can not hurt anyone. If you want to test the theory, then go gluten free and see what happens. I take 3000 mcgs of B12 methylcobalamin and my level is lower now than it was 3 yrs ago when I was taking 1000mcgs. Problem for me is, I was never tested for B12 before I started taking supplements, so we will never have a true level for me. I think I am not absorbing my B12 properly, even though my tests show a level of 1015. My iron was never terribly low, not to my knowledge. My sisters was so low, they told her she would need iron transfusions once a month for the rest of her life. Gluten free has changed that for her, no transfusions any more.

B12 deficiency is a very strong part of gluten intolerance. Gluten in a celiac/gluten intolerant's body changes so many things.

A little off subject, I know, but I love your quote, Deb. My doctors were driving me crazy telling me none of what is wrong with me is interrelated. I thought I was going to lose my mind until I realized they were wrong - everything that's wrong with me is related to long-term deficiences and malabsorption associated with my Celiac Disease.

[jlshampoing]

Originally Posted by bobbyj

Thanks for your replies, pabb and jccglutenfree.

No, I was not tested for total IgA. Because I registered something (2 RU/ml) for the Gliadin IgA, I was assuming that this meant that I was not IgA deficient - ie. if I was deficient, I would have registered nothing. Is this not right?

If I am not IgA deficient, then what would such a high level of Gliadin IgG potentially mean? Wouldn't it be unusual to have high IgG but normal IgA?

Thanks for your links, Cara, which I've been looking at. I also found this on ** website:

>>If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age. [...] A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten. This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases.<<

I've found other material on the web about so-called "leaky gut syndrome", though it seems this is somewhat controversial and not an accepted diagnosis in mainstream medicine.

My symptoms have been fatigue/lethargy (which is why I was first checked for Vitamin B12 and found to be deficient). I had B12 shots and was taking B12 sublinguals but have had no noticeable increase in energy. Other symptoms have been short term memory loss and some other cognitive symptoms (lack of clarity, generally feeling slow mentally, thinking one word but saying another); depression and anxiety; psoriasis and eczema (pre-existing for years); thirst/dry mouth; thinning hair. Previously I had some tingling and numbness in the extremities but this has stopped.

Any additional advice or ideas from anyone would be welcome. Thanks greatly.

I was also low on B12, then I asked my doctor to test also other B vitamins, and I was 5 times lower than the recommended minimun on B3 and B7 (Biotin), most other B vitamins were close to minimum except B6 and B9. B6 occasionally boost up to 3 times the recommended maximum (no explanation to this so far). But almost all B vitamines can be involved with tingling and numbness. I suggest you have all B vitamines tested (B1,B2,B3,B5,B6,B7 biotin, B9, B12). Maybe you have also other vitamin deficiencies which you did not test yet.
My test on anti paratial cells was negative and on anti intrinsic factor was positiv with a value of 15 (5 being the upper normal level). My current gastro doctor did not understand this. He seems to be Ok without being fantastic, the 2 others I had before were absolutely hopeless. They made me completely sick. They gave me PPI during 3 month on high doses without even testing my stomac acid during the gastroscopie. My docter I have now found I did not have enough acid. He said I had no gluten intollerance, but I will test this by myself (only starting now) as I have had so many mistaken diagnostics by some doctors that now, I always verify on the internet what they tell me. Unfortunately some doctors are so bad, they do more bad than good.
All the best to you anyway.