I really REALLY hate the false hope with this disease

[IDreamInColor]

Short recap: D started mid august, constant trips to the loo, everyday the same, without fail for weeks. Colonscopy and a diagnosis of "suggested" MC first week of September. Was put on questran twice a day which didn't help at all for the first few weeks, nothing helped, not even going gluten free.
And then finally one glorious day in October, Mr. Norman in all his glory came to visit. The clouds opened and the angels sang. Mr. Norman stayed for a couple weeks (minus one day in there somewhere.) So I added gluten back into my diet and went off the questran, and nothing happened, I stayed normal, Mr. Norman stayed, so I was thinking gluten must not be a problem for real.
Got my enterolab results which showed no gluten intolerance, however I do have a casein, and yeast intolerance. And even though I was eating gluten, casein and yeast I was still normal......that is for a little while, and now today....BOOOMYA!!! Nausea is back, and not wanting to eat, and although I've only had two trips to the loo, it wasn't all the way normal. It's so frustrating and scary to me. Having the anxiety disorder magnifies the problems to me, I have gotten to the point where I fear nausea, I fear abnormal potty trips, etc. It makes me just sit and cry, the years and years of agoraphobia/panic/anxiety disorder has left me a weak soul.
SO I'm guessing that eating the offending foods takes weeks for it to cause problems? SO here is my plan of attack...

1. Go back on questran
2. Eliminate gluten, casein and yeast, because although the tests showed no gluten intolerance it DID show a double DQ1 so I'm guessing that gluten for me is a ticking time bomb.
3. Call the doc and ask for the IgA test


Oh how I wish there was not such thing as eating!!!!!!

[hoosier1]

Idream,

I share your frustrations. I am also thinking of getting the IgA test as my Enterolab numbers were very low. Please keep me apprised as to what you end up doing.

Polly just posted about her relapse and she has been faithful to her diet for, I believe, ten years. So it appears that even if we are vigilant, we will still flare for unknown (or possibly known) reasons. I guess that is why it is called a disease, and one that we strive to keep in remission, but cannot necessarily cure. I still have trouble coming to grips with that fact.

Take care of yourself.

Rich

[Robbie]

I love that you have an attack plan. WTG!

[IDreamInColor]

Rich, you also had low testing scores? Did you show a gluten tolerance, or intolerance? What were your enterolab intolerances? Have you had much success with avoiding your intolerances?

[hoosier1]

Idream,

Yes, my numbers were very low. Tex recommended the IgA test for me.

See my numbers which follow:

*********

Fecal Anti-gliadin IgA 10 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 Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA 9 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

*******

I have been diligent about not eating gluten, dairy, etc. and I am not sure how much that is helping.

What were your numbers?

Rich

[IDreamInColor]

Here's my numbers:


A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 9 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 5 Units (Normal Range is less than 10 Units)

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

Fecal Anti-casein (cow’s milk) IgA 11 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal Anti-ovalbumin (chicken egg) IgA 5 Units (Normal Range is less than 10 Units)

Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA 10 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 3 Units (Normal Range is less than 10 Units)

[hoosier1]

Wow, we are both very borderline, me with gluten and you with casein. Seems everyone else is off the charts compared to us.

Tex, IgA test is in order, yes? And based on the results of that test, what direction would that take Idream or me?

I wonder what a retest would show?

Rich

[IDreamInColor]

Yep, I believe we should think about the IgA testing, I just hope my doc goes for it

[Polly]

Rich and Dream,

I would recommend that both of you get the IgA test. My hunch is that you both may have insufficient IgA levels and therefore artificially low readings on your enterolab food tests. It would be so rare for someone with MC with the significant symptoms you both have had to not have a problem with gluten (especially you, Dream, given your double DQ1 genes). It would be good to know - might make it easier to commit longterm to the GF diet.

Dream, yes, MC is a fickle disease. Remember, it can take months for the GF diet to work. And even longer if there is continued exposure to add'l. intolerances.

Good luck,

Polly

[hoosier1]

Polly,

What, exactly, do I tell my family doctor? Do I simply ask him for the IgA test? Or is there something more specific.

Thx

Rich

[tex]

I agree with your plan of action. If the IgA test result is positive for IgA deficiency, (IOW, if it shows that your immune system is not capable of producing normal levels of immunoglobulin A ), then you will not be able to trust any negative results of tests that work by detecting IgA antibodies. In that situation, you will have to determine your food sensitivities by trial and error. That may also be true if the test shows that you have a decreased level, or partial deficiency.

On the other hand, if the test shows that your immune system is indeed capable of producing normal amounts of IgA, then the Enterolab test results are apparently valid, (though that doesn't mean that you can absolutely rely on a negative result, unfortunately).

Tex

P. S. Just tell your doctor that you have reason to believe that you may be IgA deficient, and you would like to be tested. If he wants to know the reason, then your answer will depend on whether or not he is aware of your Enterolab test results. If he is, then just tell him that one of your friends is a doctor, and she recommended it, based on some of your test results. If you are trying to keep those tests a secret from him, however, then, um, er . . . uh . . . - I hope you can think of a "good" reason, because I can't.

[IDreamInColor]

Thank you Polly and Tex and everyone for your responses. I have the same question Rich asked above...how exactly should we approach our doctors with this? Do we just ask for an IgA test? Remember, my doctor doesn't believe that gluten has anything to do with it, so I'm not sure how to go about this.

[hoosier1]

OK. Calling the doctor Monday. This should be an interesting piece to the puzzle. Thanks Tex and Polly.

[tex]

Remember, my doctor doesn't believe that gluten has anything to do with it, so I'm not sure how to go about this.

Maybe Polly or someone else will have a good idea on how to handle that situation - I'm drawing a blank, at the moment.

Tex

[hoosier1]

I would think any family doc would run the test without hesitation. But I could be wrong, as I have come up against many prima donnas in the specialty fields. Gonna try to get my test done Monday as I don't travel til Tuesday. This will be interesting.