I really REALLY hate the false hope with this disease

[Polly]

Hi again.

Here are some problems that can occur because of IgA deficiency (from the internet):


"A common problem in IgA deficiency is susceptibility to infections. This is seen in about half of the patients with IgA deficiency that come to medical attention. Recurrent ear infections, sinusitis, bronchitis and pneumonia are the most common infections seen in patients with Selective IgA Deficiency. Some patients also have gastrointestinal infections and chronic diarrhea. The occurrence of these kinds of infections is easy to understand since IgA protects mucosal surfaces. These infections may become chronic. Furthermore, the infection may not completely clear with treatment, and patients may have to remain on antibiotics for longer than usual.

A second major problem in IgA deficiency is the occurrence of autoimmune diseases. These are found in about 25% to 33% of patients who seek medical help. In autoimmune diseases, individuals produce antibodies or T-lymphocytes which react with their own tissues with resulting inflammation and damage. Some of the more frequent autoimmune diseases associated with IgA deficiency are: Rheumatoid Arthritis, Systemic Lupus Erythematosis and Immune Thrombocytopenic Purpura (ITP). These autoimmune diseases may cause sore and swollen joints of the hands or knees, a rash on the face, anemia (a low red blood cell count) or thrombocytopenia (a low platelet count). Other kinds of autoimmune disease may affect the endocrine system and/or the gastrointestinal system.

Allergies may also be more common among individuals with Selective IgA Deficiency than among the general population. These occur in about 10-15% of these patients. The types of allergies vary. Asthma is one of the common allergic diseases that occurs with Selective IgA Deficiency. It has been suggested that asthma may be more severe, and less responsive to therapy, in individuals with IgA deficiency than it is in normal individuals. Another type of allergy associated with IgA deficiency is food allergy, in which patients have reactions to certain foods. Symptoms associated with food allergies are diarrhea or abdominal cramping. It is not certain whether there is an increased incidence of allergic rhinitis (hay fever) or eczema in Selective IgA Deficiency."


Rich and Dream - look through the list and see if any pertain to you. Certainly the diarrhea and abdominal cramping would qualify. You can tell your doc that you want to rule out IgA deficiency as a cause for your problems in the interest of "completeness". IgA deficiency is the most common immunoglobulin deficiency - on average 1 in 500 have the problem.

I'll be anxious to hear if you are successful.

Love,

Polly

[IDreamInColor]

Thank you Polly, well I definately qualify for the tummy problems, as well as other autoimmune diseases, I have graves disease and sinus disease. Also during the past year my knees have gotten really bad. If I stoop down, I have to have something to pull me back up with because my knees won't work. Gosh, it sounds like I'm 80 years old,lol
And although I don't get many infections, when I do get them they last forever. A couple years ago I had an extremely bad ear infection that took 10 weeks to get better.

[hoosier1]

Polly,

That is a good read. I do have the arthritis, and just this week, I noticed how profusely I bleed when I nicked my finger slightly. That is a new one for me. So, I was planning to get my platelets checked too.

If I recall correctly, I alway run on the low side for my white count. So a full CBC is in order I think.

Rich

[Gabes-Apg]

IDream
there are no false hopes with MC, just lots and lots of learnings

we have all done (and some of us are still doing) the two steps forward, one step back, spin on the spot dance step which is MC Management (mmm as I write this it is more like Rocky horror,,,, it is just a jump to the left with all the crazy people around)

When you see people that are coping and with all the information and advice on this site, it can appear that it should be easy. It takes time and every once of patience that you have

Hang in there

[JLH]

Tell him I KNOW it does and I learned it right here.

For your doc

I'd say Polly's post is pretty definitive. http://www.perskyfarms.com/phpBB2/viewt ... light=daaa

[Joefnh]

IDream Gabes said it best:

"there are no false hopes with MC, just lots and lots of learnings"

I am not sure I can add to that.

Hang in there it does get easier as your routine becomes established

Best Wishes

--Joe

[Linda in BC]

I just took a look at my test results again and realize that I might be in a similar situation as you, I Dream. I also have Double DQ1 genes but tested low (13) for Gluten, negative for Casein which I know I am intolerant of, and negative to soy which I think I am intolerant of. Results are below.

Tex, I remember you saying you were surprised that my gluten IgA was so low, and yet I was so sick, and that false negative for casein we wrote off to my having been casein free for 7 years. AndI ws jsut floored abouthe soy becasue I was so sure it had made me very sick. By the way, I was quite hopeful that the test was right about casein and that I was not casein intolerant and that it had been gluten all along, so I tested it (again and again) and nope ....I am DEFINITELY casein intolerant!!

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 13 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 6 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 299 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA 6 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Soy Sensitivity Stool Test
Fecal Anti-soy IgA 6 Units (Normal Range is less than 10 Units)

For me I am not sure what benifit it might be to have the IgA test done, because if you just hve to go by trial and error if you are low in it, then I have already done that ... and seemed to have figured it out. I am just avoiding all three ( and a lot of other things ) and am doing OK now.

[tex]

Linda,

I believe that you're probably correct in thinking that your immune system may not be capable of producing normal amounts of IgA, in view of the food sensitivities "missed" by the IgA-based stool tests. Another clue, is the fact that you had a significant score on the fecal fat test, (though it was still below the "magic number of 300, 299 almost surely indicates some degree of intestinal damage).

I'm not sure if there is any point to assessing your ability to produce IgA, or not. As long as you are aware of the possible issue, it may be a moot point. Maybe Lyn will see this post, and comment on it. She should be well acquainted with the issue, since she is IgA deficient.

Incidentally, I believe you're interpreting your gene test results incorrectly - the HLA-DQB1 label simply refers to the type of test that was used. There are two components to a "complete" gene test - HLA-DQA1, and HLA-DQB1. The test that Enterolab uses, (actually, they send the send the samples to a Red Cross laboratory, and the tests are done there), only specifies the HLA-DQB1 results. The reason for this is that it cuts the cost of the test approximately in half, and for all practical purposes, the results are almost always sufficient for accurately determining ones genetic parameters. In order to have double DQ1 genes, your serologic equivalent would have to be: HLA-DQ 1,1 (Subtype xx), rather than HLA-DQ 2,3 (Subtype 2,7).

The designations used for these descriptions are somewhat confusing, and I apologize for not pointing this out sooner, because others have made the same incorrect assumption. I agree with you, though, that you seem to have a good grip on your food sensitivities, and your recovery seems to be "on track". It's extremely difficult for someone to convince themselves that they need to prove that they are sensitive to certain foods, when a trusted test result shows that they are not. Even though Dr. Fine himself, points out that negative test results should not be trusted, if actual experiences contradict them, many people would just take the easy way out, and accept the test result. That means that you are an unusually good food detective, and a first-rate advocate for your own health. Good for you.

Tex

[Linda in BC]

Thanks, Tex, for sharing your thoughts on this. I was thinking the same thing about it being a moot point, at this stage in my journey. BTW I could not "just take the easy way out, and accept the test result" with regard to casein.. it is just too painfully obvious to ignore that I have a huge intolerance, believe me! And with soy, well, after reading a lot about it, including Dogtor J's info, I figure if I am not intolerant of it now, it is probably just a matter of time before I will be, if I kept using a lot of it. I am not as careful about soy as I am of the other intolerances (meaning I don't read labels looking for tiny amounts of it), but I stopped drinking soy milk and avoid other blatantly soy products now.

With regard to the gene readings... yes, my mistake and now I remember that I had figured it all out at one time that i was not DQ1 but forgot when I wrote that yesterday. I have been a "lot" foggy about this from day one. At first I thought I was Double DQ 1 (for the obvious reasons), then I read more closely and figured out why I wasn't, but the interpretation of my gene results left me a bit confused...I knew I had two of something.. it's just not DQ 1 genes..

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 other than by HLA-DQB1*0201, or DQ3 other than by HLA-DQB1*0302). Furthermore, HLA-DQ2 genes other than by HLA-DQB1*0201 can be associated with celiac sprue in rare cases. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

( my red highlighting)
Have I got that right?

Linda

[tex]

Have I got that right?

Yes indeed.

Tex

[TooManyHats]

I don't understand this IgA test at all. Can someone give me a short course in IgA for dummies?

[mbeezie]

Hi Everone,

I just started reading this thread and I'd like to throw another thought into the mix. I am double DQ1 and had low values on Enterolab as well (gluten 17, casein 10 and soy 9) however I AM intolernat to those things. I don't necessarily think I am IgA deficient (but I could be for all I know) but I know I get an inflammatory response from those things (some of which was confirmed by MRT). Keep in mind that Enterolab only tests one type of reaction . . .you could possibly be having a food sensitivity reaction not picked up by that test.

The test result is not the only important part of the equation in the big picture Your symptoms and how you react to food is the important part. If you do an elimination diet and find you control symptoms better off of certain foods, then by all means avoid those foods no matter what any test says. If I only followed what Enterolab told me, I'd still be very sick.

Also keep in mind that just because you don't get an immediate reaction you are not free and clear. Some foods can take up to 36 hours or longer to ellicit a reaction. In other cases it is dose response, meaning a little is Ok but if you overdo it you will have a reaction and that may take weeks to figure out. Also remember that diarrhea is not the only symptom that these tests pick up. In fact, casein (and gluten too) could actually have a more constipating effect (although still inflammatory) and because you are only thinking of diarrhea you miss the fact that you are reacting to it. Gluten causes a wide range of symptoms, not just D. In fact, I had neurological symptoms from gluten insensitivity long before diarrhea started. So if anyone is positive through Enterolab testing and thinks they are asymptomatic, you might want to think about a broader range of symptoms.

Determining food triggers is a painfully slow process, even when tests are involved because these tests don't tell you everything. They are crude tools to point you in the right direction. Trial and error is really how it works, but the tests can help speed the process. And new food intolerances can crop up at any time.

I firmly believe in the value of Enterolab and think if you have a positive result you should avoid that food. I recognize that IgA deficiency can be a problem and testing may be warranted, but we need to think a little more broadly about the scope of food intolerance as there are many mechanisms by which we lose tolerance to food, not just IgA.

I realize my post will frustrate some of you, but I think we all want someone to tell us what we can and cannot eat. I wish that were true. I also wish that diet cured this or any AI disease but it does not. It helps to manage symptoms, but we will always have the disease.

I am hopeful that everyone can find a bit of relief through diet, so hang in there.

Mary Beth

[MBombardier]

Good words, MB. And one of the best things about this forum is there are those who have patiently waded through the symptoms that their bodies are throwing at them and figured out what works and what doesn't. Knowing that I know people who have "been there and done that" and won through to remission is enormously encouraging.

[tex]

I don't understand this IgA test at all. Can someone give me a short course in IgA for dummies?

Certain tests for food sensitivities, (such as the stool tests used by Enterolab), determine results by testing for immunoglobulin type A, (IgA), antibodies. IOW, if there are IgA antibodies to a certain protein, (such as gluten, or casein), in the test sample, and the level is above a certain threshold that has been established as a "breakpoint" for determining "pass" or "fail" values, then the sample will be judged to test positive to that particular antibody.

Unfortunately, some people are born without the ability to produce normal amounts of IgA antibodies. This condition is referred to as selective IgA deficiency, by medical professionals. For someone who is IgA deficient, no matter how much they might be affected by an allergen, or food sensitivity, or whatever, they will never show high amounts of IgA antibodies in any type of screening test, whether the test uses blood, stool, or tissue. IOW, IgA tests are invalid for those individuals, because they will almost always show a false negative result. In this country, approximately 1 in 300 people have selective IgA deficiency.

Tex

[ant]

Dear Mary Beth and Tex

Thanks for your knowledge and wisdom on these complex things,

Best ant