Iga Deficiency, Lactose Intolerance, Erosive Gastritis

[Elcamino]

Hi all,

I've been reading your posts for quite a while now. I was given the celiac panel about 6 weeks ago. Evidently, the results are meaningless because I am IgA deficient (they did conduct a total IgA for me). GI, to exclude Celiac and positively diagnose me with IBS, took multiple duodenal biopsies last week. Only positive finding at the time of the exam was erosive gastritis; still waiting on biopsies on celiac and cause for the erosive gastritis.

I am also severely lactose intolerant and have been for most of my life. Everytime I google IgA deficiency and lactose intolerance, Celiac-related websites pop up. I've also read that a minority of celiacs are actually IgA deficient. My problem is that my GI is just dying to diagnose me with IBS and get me out of his hair (what little of it there is ), so he's already biased against a celiac diagnosis (as I suspect most doctors seem to be). Also, I guess without some kind of laboratory proof, I'm hesitant to try a completely gluten-free diet without the endorsement of a medical professional. Someone has mentioned the use of enterolabs to test for celiac? Can you provide me with the website information?

It would be much appreciated!

Elcamino

[par18]

Hi,

I guess my question to you is why do you need the endorsement of a medical professional to at least give the diet a try. If you do try it and it does not work then to me that would be reason to maybe test for something else. Trying the diet is "free" as opposed to the expensive testing. If however you do try the diet and it helps and then decide to get further Celiac testing then go back to gluten and try to get a positive diagnosis. If you do in fact have undiagnosed Celiac Disease or Gluten Intolerance then the ultimate treatment is still the same. The "diet" is the only treatment now or later.

Sounds like your initial experience with the medical profession has not been successful. Hope this helps.

Tom

[Elcamino]

Hi,

I guess my question to you is why do you need the endorsement of a medical professional to at least give the diet a try. If you do try it and it does not work then to me that would be reason to maybe test for something else. Trying the diet is "free" as opposed to the expensive testing. If however you do try the diet and it helps and then decide to get further Celiac testing then go back to gluten and try to get a positive diagnosis. If you do in fact have undiagnosed Celiac Disease or Gluten Intolerance then the ultimate treatment is still the same. The "diet" is the only treatment now or later.

Sounds like your initial experience with the medical profession has not been successful. Hope this helps.

Tom

I'm hesitant to just try the diet because it seems pretty difficult to eliminate gluten altogether, and I'd be eliminating a good source of grain with no justification. I guess I don't need an endorsement from the medical profession; I'm just trying to get up enough nerve to try the diet. Thanks for your reply. I will look into some details regarding the diet.

Elcamino

[nowheatnomilk]

listen to your body I'm lactose intolerant. I drink lactait and avoid all dairy products. when I had realize I was lactose intolerant and followed the diet recommendation, the symptoms did NOT go away.

I was tested for celiac. and have both. along with mention acid reflux.

[F.deSales]

Hi all,

I've been reading your posts for quite a while now. I was given the celiac panel about 6 weeks ago. Evidently, the results are meaningless because I am IgA deficient (they did conduct a total IgA for me). GI, to exclude Celiac and positively diagnose me with IBS, took multiple duodenal biopsies last week. Only positive finding at the time of the exam was erosive gastritis; still waiting on biopsies on celiac and cause for the erosive gastritis.

I am also severely lactose intolerant and have been for most of my life. Everytime I google IgA deficiency and lactose intolerance, Celiac-related websites pop up. I've also read that a minority of celiacs are actually IgA deficient. My problem is that my GI is just dying to diagnose me with IBS and get me out of his hair (what little of it there is ), so he's already biased against a celiac diagnosis (as I suspect most doctors seem to be). Also, I guess without some kind of laboratory proof, I'm hesitant to try a completely gluten-free diet without the endorsement of a medical professional. Someone has mentioned the use of enterolabs to test for celiac? Can you provide me with the website information?

It would be much appreciated!

Elcamino

Hi Elcamion!

I have complete IgA deficiency and allergic to lactose/casein. I am currently being tested for ceilac sprue. My doctor told me that there was a NEW blood test that was for people with IgA deficency its called: Tissue Transglutaminase. Do a google search to learn more about the test. If your doctor has not ordered if ask him too. I will be going to the lab today to have that test done.

My doctor also wants to do a EGD and a colonoscopy which I will have in two weeks. I have nerological problems also and my nerologist told him to do a biopsy. I have been gluten-free for 7 weeks and have been feeling better but now I have to go back on gluten to make sure the test is accurate.

I would love to hear if you had the Tissue Trans. test and what the results were. I hope you don't end up like me, I started with low IgA and became total. I am in the 3-5% of IgA-ers who are severely immune compromised, multiple related illnesses plus allergic to blood other than my own.

Let me know what you results were if you don't mind.

Best wishes to you.

Angie

[ravenwoodglass]

I think the most important thing that I have to add is that relying on blood work for celiac confiramtion almost killed me. I was tested over and over and over, along with tests for lots of other things. An average blood draw for me at the 'best' hospital in my area (it is well know nationally) was 20 tubes and still left me in the dark and dying. It was not till I was literally at death door that a elderly and savvy allergist put me on a true elimination diet and celiac was found. It was then reluctantly confirmed by my GI when his gluten challenge caused a major GI bleed.

Do not be afraid to try the diet because you think you will be lacking something by giving up wheat, rye and barley. They have in reality very little nutritional value, none actually if you are not digesting them, and the carbs you will lose can be replaced with rice, veggies and fruits. Once you get used to it and the inane way some foods are labeled it really is not hard and is much healthier than the typical deadly American diet.