I am a newbie!

[tex]

Sharon,

I'm sorry — that apparently didn't come across the way I intended. I didn't mean to imply that it was a dumb question, because there are no dumb questions. I'm just opposed to the addition of highly processed foods in the diet of anyone who is in the recovery stage with this disease. If you had listed the ingredients in your previous post, I would have pointed out why I consider it to be a very bad choice. In addition to the risks imposed by the number of ingredients in such products, (as Marliss mentioned), the whey would cause probably 80 to 85 % of us to react, and many of us cannot tolerate stevia, or any other artificial sweetener.

I have no idea how much longer it will take for your copy of the book to arrive from Amazon, but if you would like to get a head start on reading it, I'll be happy to email you a digital version of the book for any type of e-reader that you might have, or I can send a PDF version that you can read on your computer, using Adobe Reader (free of charge, of course). Just let me know what type of digital device you have, so that I can send the correctly-formatted version, or let me know if you would prefer a PDF copy.

And yes, unless you happen to have selective IgA deficiency (about 1 in 300 to 500 people in the general population have it), the EnteroLab tests should be very helpful for determining whether or not you are sensitive to any of the most common inflammatory foods.

Tex

[sharonbelterday]

What is IgA and IgE and how do I know which test to take?

Sharon

[Zizzle]

Welcome Sharon!
IgE are the antibodies produced in true food allergies, seasonal allergies, anaplylaxis, etc. An allergist can check for these with blood tests (RAST) and skin prick tests. Most of us have few IgE-mediated allergies. IgA antibodies are produced in the gut from food intolerances and can lead to chronic inflammation. Few regular doctors have any ability (or desire) to look for these. Enterolab tests for them in the stool samples.

[tex]

EDIT: I see that Zizzle posted while I was writing. I completely agree with her. My post just expands on what she says.

Most classic allergies primarily produce IgE antibodies, and these antibodies lead to the rapid release of histamines, and other inflammatory mediators, resulting in the classic symptoms of sneezing, itching, runny nose, watery eyes, rash, hives, etc., and in sever cases, anaphylactic symptoms (which can be life-threatening, of course). IgE antibodies are primarily produced by allergen contact with the skin, the mucosal tissue of the mouth, or the upper respiratory system. These are the antibodies that allergists and immunologists are trained to look for. Continuing IgE-type reactions often lead to the development of IgG antibodies, which simply tell us that an IgE-based reaction is mature (or long-term).

IgA antibodies are the result of reactions to food sensitivities in the gut, and they take longer to develop than IgE antibodies, usually a few hours to a few days. IgA antibodies are easily detected in the gut, either by examining ELISA-treated biopsy samples taken from the colon under a microscope, or by the stool tests offered by EnteroLab. But IgA antibodies can only be detected in the blood after severe damage has occurred to the intestines, so that's why it takes an average of 9.7 years to get a diagnosis of celiac disease in this country (because the celiac blood tests have such poor sensitivity).

Therefore, IgE antibodies are usually of no value for treating MC. The only time that they are of interest to us is when we have the complicating effects of mast cell issues (mast cell activation disorder). But even then, it may do no good to use a blood test to search for them, because IgE antibodies that normally show up in the blood are not associated with IgE reactions in the gut.

So to cut to the chase, IgA antibodies are the most important by far, for tracking down food sensitivities that cause GI issues associated with MC. And the only lab that offers stool tests that are accurate and reliable for detecting IgA antibodies is EnteroLab, in Dallas, Texas. Panel A at EnteroLab includes tests for the most common (and most significant) food sensitivities associated with MC, while Panel C includes tests for the next most likely foods to cause problems. Most members here take Panel A, and they also take panel C, if they can fit the added expense into their budget (because many insurance companies do not yet pay for these tests).

If you want, you can view some past member test results here and here.

Information About Tests Performed by EnteroLab

Tex

[sharonbelterday]

Thanks, everyone for educating me!

I will order the EnteroLab tests. Do I need to order the gluten one if my GI doc tested for gluten during the biopsy? Tex mentioned celiac disease not showing up for years in the blood, but I'm sure about BIOPSY results for gluten.

Let me know and I will get the tests ordered. I have been GF for awhile before my biopsy diagnosis (trying anything to feel better), eating GF bread, pasta, etc, so don't know if that will affect the accuracy of the results.

Also, thanks for the info on exercise and MC. I am tuckered out, so will keep walking my lovable dog and doing more when I can. (Oh, he can walk...I am carrying him in the photo because we were hiking over a very sharp obsidian glass flow in Lavalands National Monument).

Luck to all of you and your recoveries!

[Zizzle]

Tex,
I'm going to partly disagree with this one:

because IgE antibodies that normally show up in the blood are not associated with IgE reactions in the gut.

I know several people, mostly children, who suffer from IgE reactions to food in their gut and not elsewhere. My daughter is IgE allergic to most legumes, but the reaction appears to be confined to her stomach and intestines (stomach ache and D). They only resulted in hives once. A good friend's son who suffers from upper respiratory allergies and occasional eczema just tested off the charts (blood) for wheat and dairy IgE allergy. He does complain of tummy aches after eating, but no other immediate reactions. I know 2 boys with Eosinophilic Esophagitis, which is an IgE reaction to food confined to the esophagus without an abrupt onset after ingestion. It results in a more chronic inflammation of the esophagus.

[tex]

I will order the EnteroLab tests. Do I need to order the gluten one if my GI doc tested for gluten during the biopsy? Tex mentioned celiac disease not showing up for years in the blood, but I'm sure about BIOPSY results for gluten.

Did your pathology report actually say anything about gluten? That would be extremely unusual. Are you referring to biopsy results from an upper endoscopy (IOW biopsy results from the duodenum), or biopsy results from the colon? The reason I ask is because standard celiac biopsy results from the small intestine have nothing to do with this issue. Biopsies of the small intestine assess the degree of villus atrophy, and unless the damage is at least at a Marsh 3 level, the diagnosis will be negative for celiac disease. But that has nothing to do with gluten sensitivity. Mainstream medicine has absolutely no way to reliably test for gluten sensitivity, because most doctors don't officially endorse the stool tests offered by EnteroLab.

The biopsy analysis that I was referring to is an ELISA Assay for IgA antibodies to gluten performed on a biopsy sample, usually taken from the colon, but a sample from the small intestine should work just as well. This test is available for laboratory research, but I'm not aware of any practicing doctor who ever uses it for patients, and I seriously doubt that your doctor ordered it for you, because that would be very, very unusual.

Unless your pathology report specifically address the results of an ELISA Assay that tests for IgA antibodies to the alpha gliadin peptide (or some version thereof), you have not been tested for gluten sensitivity, despite what your doctor might have told you. If you're unsure how to read the pathology report (since it's written in doctorspeak), post it, or PM me, and I'll be happy to interpret it for you. The pathology report is not the report that your GI specialist typically offers, it's the report actually written by and signed by the pathologist who examined your slides, and offered a diagnosis. It's the one sent to your GI specialist, and then she or he usually rewrites it and dumbs it down for the patient. The problem is that many GI docs have a bad habit of misinterpreting the information on pathology reports when MC is involved. It's much, much better to review those reports yourself, and form your own opinion, because most GI docs regard MC as "a minor inconvenience that involves a little diarrhea".

Besides, it's much cheaper to order panels, rather than individual tests, unless you only plan to order 1 or 2 tests.

Unless you have been avoiding gluten for over a year, you should still show positive results on EnteroLab's gluten (anti-gliadin) test, (unless of course, you actually are not sensitive to gluten), because their gluten test is extremely sensitive (several orders of magnitude more sensitive than the obsolete blood tests that doctors use). For the other foods though, your results may be less pronounced if you have been avoiding those foods for more than 3 or 4 months. It depends on how long you had been reacting to any particular food when you stopped eating it. The longer we have been reacting, the higher our antibody levels, and so the longer it takes for those levels to decay to below detectable thresholds.

Tex

[tex]

Tex,
I'm going to partly disagree with this one:

because IgE antibodies that normally show up in the blood are not associated with IgE reactions in the gut.

I know several people, mostly children, who suffer from IgE reactions to food in their gut and not elsewhere. My daughter is IgE allergic to most legumes, but the reaction appears to be confined to her stomach and intestines (stomach ache and D). They only resulted in hives once. A good friend's son who suffers from upper respiratory allergies and occasional eczema just tested off the charts (blood) for wheat and dairy IgE allergy. He does complain of tummy aches after eating, but no other immediate reactions. I know 2 boys with Eosinophilic Esophagitis, which is an IgE reaction to food confined to the esophagus without an abrupt onset after ingestion. It results in a more chronic inflammation of the esophagus.

Hi Zizzle,

Fair enough, but I can't see where you actually disagreed with me. In fact, your examples seem to confirm exactly what I was trying to say. You didn't say anything about any lab test results for these individuals, you only discussed their symptoms, without mentioning any lab data. Are you implying that these individuals showed positive IgE serology to certain foods that caused them to have GI symptoms (but not classic allergy symptoms), and that they did not show antibodies in either stool samples or intestinal biopsy samples?

My point was that if we show IgE sensitivity to certain foods in the gut, then those IgE antibodies are produced in the gut, not in the blood, and they won't necessarily show up in the blood. The IgE antibodies that typically show up in the blood are not normally a result of a gut IgE reaction — they're the result of a classic allergy reaction, and they cause classic allergy symptoms. They're different modes of reaction, even though they both involve IgE antibodies, and your examples seem to verify that.

That's why type 1 antihistamines work best for blood-borne IgE antibodies, while type 2 antihistamines are more effective for IgE antibodies produced in the gut. I suspect that in most cases, both types are probably present, but I'll bet that a lab worker who knew what she or he was doing would be able to separate them and track down the respective sources. All this is just my opinion, of course, but do you see what I'm trying to say?

Tex

[Zizzle]

My point was that if we show IgE sensitivity to certain foods in the gut, then those IgE antibodies are produced in the gut, not in the blood, and they won't necessarily show up in the blood. The IgE antibodies that typically show up in the blood are not normally a result of a gut IgE reaction — they're the result of a classic allergy reaction, and they cause classic allergy symptoms.

All 4 children I mentioned showed positive IgE serology in the blood for food allergens, and their symptoms are primarily relegated to the GI tract -- no "classic" allergy symptoms. Most also had positive skin prick tests for the food allergens, but again, symptoms are only digestive. I don't think any had lower GI studies to prove IgE in the gut, although those with EoE has positive tests in the Esophagus.

Does eczema count as a classic allergy symptom? It is frequently seen in children with wheat and/or milk allergies. Constipation is also seen in milk allergy.

[tex]

Zizzle,

I was still editing my post when you responded. Please read it again, and note what I added while you were posting.

Regarding your last post, the serology results do conflict somewhat with my theory, but I have a hunch that those individuals would also show high levels of IgE antibodies in the gut, that probably would be absent for anyone who did not have GI symptoms as part of their reactions. Perhaps they do not show the classic allergy symptoms to IgE antibodies in the blood because they are simply asymptomatic (to the classic symptoms), but they are not asymptomatic to the antibodies in the gut. These are pretty much uncharted waters.

I wouldn't consider eczema to be a classic allergy symptom, since it's usually associated with GI issues, but again, that's just my opinion.

Tex

[sharonbelterday]

I ordered the EnteroLab Panels A & C and did the complete questionnaire.

I looked at my lab reports for blood work and they should negative for TTG IgA (3), but Tex said it takes over 9 years average to show up, so I am doing the whole shebang. I received nothing from my biopsy except:

5/22/2013 12:36 PM PDT
Dear Ms. Day,
Writing to let you know that your biopsy results from your colonoscopy were normal.
Best,
Adam Z., MD

With a follow up phone call of "Oh, by the way you have MC, and I will prescribe Mesalamine, so that should make the inflammation that's causing your diarrhea go away". LOL. After a couple of weeks of no results, I started investigating online, and found your site.

Tex's book is supposed to arrive Friday. Hallaleuja!

Thank you Tex, and everyone, for being there and answering my questions. I am so looking forward to having my normal life back, being able to hike again, and know what to eat. Now there's hope...

Sharon

[Zizzle]

I received nothing from my biopsy except:

5/22/2013 12:36 PM PDT
Dear Ms. Day,
Writing to let you know that your biopsy results from your colonoscopy were normal.
Best,
Adam Z., MD

With a follow up phone call of "Oh, by the way you have MC, and I will prescribe Mesalamine, so that should make the inflammation that's causing your diarrhea go away".

This stuff drives me CRAZY!!!! How can docs report a colonoscopy as normal when MC is present?!?!? I've seen this happen way too many times!!
My FIL had a normal colonoscopy. "Just a little inflammation, but all normal" WHAA?!?!
My MIL had a normal colonoscopy. I insisted they stain for mast cells, and the doc admitted they were elevated, but not high, so no cause for alarm. She just got her records yesterday and there were the words of the pathologist - a confirmed case of Mastocytic Enterocolitis!!!

I tell everyone -- ALWAYS ask your doctors for copies of your lab results before you leave the appointment. They are YOUR records and you have a right to them. Keep an organized file or 3-ring binder at home of all your results, especially since you will eventually seek second opinions or new types of providers. Do not count on your doctor's interpretation of those results!

[Leah]

Nice to "see" you Sharon. Can you get that picture to be your avatar?

[sharonbelterday]

Leah, I will add my photo to my avatar. I tried, but the file size was too big. I have to figure out what size it needs to be and then have hubby correct the size.

I will also have Tex post the results of my EnteroLab panels, once I get them. Do you just copy them on a post to Tex, or do you have to put all his contact info in the "provider" section at EnteroLab?

I never thought to ask for copies of my biopsy. My other lab results are regularly mailed to me and I can also find them online, but I looked today and no biopsy results. Maybe I should request them...I am sure Tex can interpret them better than the docs can! Sheesh! It's a good thing you are looking out for your FIL and MIL, Zizzle!

Marliss, your doctor's office is about 5 minutes from my house. We should get together for tea sometime if you live close by.

I am so looking forward to getting to know you all and read Tex's book. There's a lot to learn and I really appreciate all the informative posts AND the encouragement.

Sharon

[tex]

Sharon,

Most members just post their results, and I can easily copy them to the list on the other forum.

The system should accept any image for upload as an avatar, as long as the file size doesn't exceed 6.0 KB.

Analyzing that image, the physical size is smaller than needed, but the resolution is much higher than needed (300 dpi, rather than 72, which is used for normal display resolution), which increases the file size disproportionately. Would you like for me to convert it to an avatar and upload it? I'll be happy to do so.

Tex