So confused...

[Trace]

Hello everyone. I'm a little confused by some test results, and my Dr. is just unable to explain it to me. In 2006, I was diagnosed with MC. Then in 2008 I got the Celiac confirmation. The blood allergy test at that time showed wheat, yeast, shellfish, and safflower. Blood work showed low Vit D and low iron.

This November, I got a food panel done by enteroLab. It was extensive: soy, dairy, egg, chicken, tuna, pork, rice, wheat, cashew, walnut, almond (I think I got it all..). Last week, I had blood work done and another RAST test performed. The blood test showed excess iron in my blood, and I showed up with no allergies. Vit D was within normal range.

Can anyone explain to me how I lost the allergies? And, the newest RAST tested for gluten allergy...should I (as a celiac) have reacted to that? ANd what about the excess iron?

Thanks for any input.

Traci

[tex]

Hi Traci,

You haven't lost the food-sensitivities. The problem is that the blood tests are so insensitive that they are worthless for detecting the type of food-sensitivities that we have. The stool tests done by EnteroLab are several orders of magnitude more sensitive than the blood tests that are available.

Also, most doctors don't understand how food-sensitivities work, and they mistakenly believe that they are allergies. We're usually not allergic to those foods, (instead, we're intolerant of them). Therefore doctors mistakenly look for them using IgE and IgG tests, and unfortunately, food-sensitivities in the gut will not put IgE and IgG antibodies in the blood in sufficient quantities to trigger a positive test result. The celiac screening blood test checks for IgA and IgG antibodies in the blood, but the only people who will test positive with that test are those who have fully-developed celiac disease, (including at least a Marsh 2 rating on villus damage in their small intestine). If you have at least partially healed, then the blood test will not detect celiac disease. That doesn't mean that you no longer have it, though - it just means that the test is worthless for detecting it, unless you have a lot of internal damage.

Once you have a diagnosis of celiac disease or MC, you will have that disease forever - the diseases are not curable. The only treatment that works effectively is to avoid the foods that cause the symptoms.

The elevated iron could be due to a condition known as hemochromotosis. For someone who has the condition, it causes too much iron to be absorbed in the intestines, whenever more iron than is needed, is present in the diet. Primary hemochromatosis is the most common genetic disorder in the United States, affecting an estimated 1 of every 200 to 300 Americans, and the statistics are probably similar in Canada. Also, in addition to genetics, certain diseases can cause secondary hemochromotosis, especially if the patient has had a large number of blood transfusions.

You're confused because your doctor is confused.

You're very welcome,
Tex

[Zizzle]

Now I'm confused.

The way I read your post is that you have MC and celiac and were previously diagnosed with food allergies via blood tests. It seems the celiac damage caused anemia and low Vitamin D. Now that you have been GF for a while, I'm assuming your small intestine villi healed, allowing you to absorb iron and Vitamin D again. I'm guessing you've been on iron supplements, given your initial tests, and should discontinue them now that you are overdoing it.

Regarding the food allergies (I'm new to this area as of today -- spent all day at the allergist with my daughter!), I'm guessing that you had a seriously leaky gut when the celiac damage was present, thereby allowing more food proteins into your bloodstream and triggering these allergic tendencies. With the leaky gut possibly healed, and with your immune system acting more normal on the GF diet, maybe the food allergies resolved? I know RAST tests can result in false positives, so maybe they were simply picking up on the leaky gut phenomena back then?

[Zizzle]

What did you test positive for on your recent Enterolab test? Remember, that's not testing for food allergy, only intolerance, so you should not expect those results to match.

[Deanna in CO]

Tex, not to hijack the thread, but are you saying that Enterolab testing is better than the MRT blood tests as well? I've been planning on doing MRT when we can swing it financially; wasn't really planning on Enterolab right now because the cost of the more extensive test is prohibitive. I think it's pretty safe to assume gluten and dairy intolerance just because of the MC diagnosis, right? I can test soy (eventually) and egg at home when I'm doing well (in fact I tried adding egg yesterday and today it seems clear that isn't going to be tolerable for me right now - I will try it again when/if I get this little flare under control just to be sure it's not a random occurrence).

Deanna

[tex]

Deanna,

Basically, the EnteroLab tests measure IgA antibodies in stool. This is the most sensitive and reliable, (repeatable), test available for food-sensitivities, since the antibodies are produced in the intestines, and are rarely even detected in the blood in sufficient levels to allow reliable testing. The EnteroLab test results, (while not perfect), are highly reliable, and can almost always be relied on, (except in patients with selective IgA deficiency). If you are sure that you are sensitive to certain foods, though, then confirmation by lab testing may not be necessary. Dr. Fine himself will tell you that you don't need lab testing to determine food-sensitivities, if you are willing to use an organized and careful trial and error testing program.

The MRT does not measure any antibodies. Instead, it works by measuring changes in the solids to liquids ratio of blood samples after they are exposed to each type of food antigen. How or why it works - nobody knows. But based on these ratio changes, foods are ranked in order of reactivity potential. Nothing is conclusive with these tests, (despite claims of better than 90% accuracy). All foods must be tested by the patient, after following an elimination diet for a while, to determine reactivity by trial and error. The test results basically provide a starting place for elimination diet trial and error food testing, (which, of course, can be done without the test, but many people find that the test inspires them to be more disciplined with their testing, than they would be without it).

The hitch is, it's best done with the guidance of a nutritionist trained and certified to work with the program, but the only nutritionist in the world who actually understands MC, seems to be Mary Beth. Selecting a diet without a good working knowledge of foods that commonly trigger MC reactions, (including mast cell issues), seems to be a major stumbling block for many nutritionists.

Anyway, those are my thoughts on the two types of testing.

Tex

[Trace]

Thanks for the replies. I'll see if I can clarify some points.

Zizzle, I found EnteroLab through this site in 2008 after my MC diagnosis of 2006. I was having blood in my stool, throwing up every meal, and still my Gastro said to eat fiber. Tex suggested I look at Dr. Fine's site. So I did. Had genetic test and stool tests done. Malabsorption was in the 1500's or so and I showed reactions to all the tested food. After getting off gluten, the MC healed, but I still threw up but there was no blood in my stool. Dr. in 2008 did the RAST, confirmed the Celiac, said my iron and Vit D were low. Historically, I cannot take iron supplements, so I didn't do anything about it except eat my dark, leafy greens.

Now, 2011, I am out of MC remission and there's blood in my urine and stool , which is always how the MC/gluten contamination has presented. But, I was pretty darn sure I wasn't getting any gluten, so I was thinking that other foods may cause the irritation. Returned to EnteroLab and had the food sensitivity testing done and stool panel: yeast, wheat, egg, dairy, soy , cashew, almond, walnut, chicken, pork, beef, rice, wheat, corn, potato were all reactive. I have gone through everything that touches my skin or mouth, and I can't find any reason why I would be getting gluten enough to get MC started up or my kidneys. In fact, my stool panel showed higher numbers of gluten reactivity than the first one I did in 2008 when I was ingesting gluten.

Two weeks ago I went to a new Dr. who tested the urine, confirmed the obvious blood, and ruled out infection. Told I'm super hypersensitive and wanted to do a food allergy panel, but I show no "moderate" reactions. Plus the possible hemochromatosis.

Thank you Tex! I do think my Dr. is confused, but now I"m a bit clearer on what it all means. My intestinal tract tells me true, even if I don't want to hear it!!! (Now I have to find that sneaky gluten!!!)

Another question: So my daughter had the same RAST test done. She showed allergy to wheat, soy, dairy, some nuts. I know that genetically she is Gluten Intolerant (Tested after my Diagnosis of Celiac). SHe claims that she's not having any issues with wheat...but, if I understand this correctly, she IS! and she's causing the same leaky gut that I had when I was still eating gluten??

Have a great day! It's going to rain this afternoon in Central CA...so I'm off to plant my squash!

[Trace]

Now I'm confused.



Regarding the food allergies (I'm new to this area as of today -- spent all day at the allergist with my daughter!), I'm guessing that you had a seriously leaky gut when the celiac damage was present, thereby allowing more food proteins into your bloodstream and triggering these allergic tendencies. With the leaky gut possibly healed, and with your immune system acting more normal on the GF diet, maybe the food allergies resolved? I know RAST tests can result in false positives, so maybe they were simply picking up on the leaky gut phenomena back then?

This makes perfect sense to me! Interesting point about the leaky gut. WHen I had the first blood test, besides the yeast and wheat, everything else on that list had been ingested within 72 hours...seriously. I only recently started eating yeast again, so that was at least something I expected to show up. Nope. (Although, yes, it does show up on my stool tests. sigh. ) And, when I look at the blood test my daughter had performed two weeks ago, everything on her list had been ingested within 72 hours or so.

What will be most interesting to me, though is that my son, who shows obvious wheat issues, genetically is NOT celiac, had a stool test from EL this past autumn. Eggs, dairy, soy, wheat, all issues. He just had a blood test for allergies. I'm going to do some research on this leaky gut....

All okay with your daughter? I appreciate your time!
Traci

[tex]

In fact, my stool panel showed higher numbers of gluten reactivity than the first one I did in 2008 when I was ingesting gluten.

What that means is that you're more reactive to lower levels of gluten than you were previously. For most of us, when we stop eating massive amounts of gluten, the immune system becomes more sensitive to smaller amounts, (since it's no longer overwhelmed by a huge dose every day).

The actual numbers on those stool test results are more a function of the length of time that we have been reacting, rather than the amount of gluten, (or other food-sensitivity), ingested. IOW, the longer we consume a food antigen, (even in tiny amounts), the higher the number will tend to be. Back in December, I seemed to be reacting to something, so I ordered an EnteroLab test, and discovered that my antigliadin antibody level was 62. I tracked the problem down to cross-contamination problems with gluten.

There is a huge problem with cross-contamination problems in many GF commercial foods. The more ingredients in a product, the higher the risk that one of them is cross-contaminated. Manufacturers have good intentions, but unfortunately, most of them don't regularly test their ingredients, and neither do their suppliers. Spot checks of GF products on store shelves almost always turn up a surprisingly high level of gluten contamination. For some people, the level of contamination is not high enough to trigger a reaction, but many of us react to very small amounts of gluten - especially if we ingest those tiny amounts regularly. It's enough to keep the inflammation going, and to allow it to slowly build up higher and higher antibody levels, until we begin to react.

And it can easily happen at home, also. The presence of wheat flour in an otherwise GF kitchen is enough to virtually guarantee a reaction, somewhere down the road, IMO.

Another question: So my daughter had the same RAST test done. She showed allergy to wheat, soy, dairy, some nuts. I know that genetically she is Gluten Intolerant (Tested after my Diagnosis of Celiac). SHe claims that she's not having any issues with wheat...but, if I understand this correctly, she IS! and she's causing the same leaky gut that I had when I was still eating gluten??

Yes, this is how celiac disease begins, by continued exposure to gluten, (in the presence of certain other environmental influences). Intestinal permeability becomes progressively more severe, with repeated exposure, until it finally becomes sufficient to allow peptides to cross the barrier. After the gut becomes leaky, the disease develops more rapidly, and the familiar clinical symptoms show up. By this point, a lot of damage has been done. By the time a celiac blood test shows a positive result, the damage to the small intestinal villi has already exceeded a Marsh 1 level, or higher.

Tex

[Zizzle]

Trace,
You may really benefit from Cyrex Labs Celiac Cross-reactivity testing. It tests for a bunch of foods that share similar proteins to gluten. That's how I discovered my severe sesame seed sensitivity -- and promptly achieved remission when I stopped eating them in all my GF crackers. My integrative medicine doctor ordered the test and Aetna paid for it! He also ordered their Intestinal Antigenic Permeability Screen, which showed I still have a leaky gut, so I take L-Glutamine, among other things.

Check out these links:

http://www.cyrexlabs.com/CyrexTestsArra ... fault.aspx

Great analysis here:
http://www.adventuresofaglutenfreemom.c ... ive-foods/


My daughter is OK for now. We got her blood drawn this morning for celiac and various RAST tests. I gave her Allegra and dropped her off at daycare, then cried all the way to the office. She's so delicate, tiny, has my hypermobile joints, has my husband's severe tree pollen allergies. I just want to keep her in a cocoon and protect her!! What have my genes and my bacteria done to her?

[Zizzle]

Yes, this is how celiac disease begins, by continued exposure to gluten, (in the presence of certain other environmental influences). Intestinal permeability becomes progressively more severe, with repeated exposure, until it finally becomes sufficient to allow peptides to cross the barrier. After the gut becomes leaky, the disease develops more rapidly, and the familiar clinical symptoms show up. By this point, a lot of damage has been done. By the time a celiac blood test shows a positive result, the damage to the small intestinal villi has already exceeded a Marsh 1 level, or higher.

Tex

Ugh, Tex, that's depressing. I think that's the stage my daughter is in. She developed itching and hives the other day and she's being evaluated for potential food allergies. Her allergist says most kids are growing out of allergies at her age, not adding them, so it must be a result of gluten-induced leaky gut. She's had loose stool every day for months now. They did celiac testing. In some respects, I want it to come back positive, so we have reason to go GF right away, instead of waiting for more issues to make it obvious.

[tex]

Zizzle,

I'll offer another tip from my book. Mast cell involvement is an essential ingredient, (according to my theory), in the "formula" necessary for the development of autoimmune disease, (including, but not limited to, celiac disease and MC).

Also, this accepted claim by allergists is a fallacy:

Her allergist says most kids are growing out of allergies at her age, not adding them

In my strictly unprofessional opinion, that's a cruel mistake made by allergists in particular, and the medical community as a whole. What actually happens is the body develops a "tolerance" for them, lulling everyone, (including the "experts"), into believing that kids "outgrow" allergies, celiac disease, etc. That doesn't happen - the problem is still there, it's just hidden by the lack of clinical symptoms, and the failure of doctors to use tests capable of detecting the antibodies. Stool tests will reveal the antibodies - blood tests will not, until/unless the internal damage is extremely severe.

When I was researching information for my book, I discovered that few people actually outgrow celiac disease, despite claims by "experts" to the contrary. Research shows that the damage continues to accrue. I'm going to include a quote from my book, and if someone accuses me of plagiarism when the book is published, screw 'em, because I'm clearly stating here that this a quote from that book, and I reserve the right to change the wording in the final version.

In one study of 61 adult patients who had resumed eating gluten at some point after a childhood diagnosis of celiac disease, and who had remained free of clinical symptoms, 79% showed some degree of villus atrophy, on biopsy, while 21% showed no evidence of villus atrophy.20 Of those who still showed some degree of villus atrophy, 70% showed signs of osteopenia or osteoporosis, while only 11% of those with no detectable level of villus damage showed evidence of any significant changes in bone structure or strength.

Browsers don't properly display the superscripted formatting of the reference number, and obviously the book won't have red highlighting, but nevertheless, here is that reference, (number 20): http://gut.bmj.com/content/early/2007/0 ... 006.100511

You will notice that in the conclusions, the authors downplayed and de-emphasized the seriousness of the symptoms, and instead, tried to provide a convincing argument that such "latency" is common, and safe. IMO, that's just sweeping the problem under the rug.

Tex

[Zizzle]

Is there anything I can do to halt the mast cell process in a young child? Is she born with too many or is she developing them??

[tex]

She probably has a normal amount, but various triggers are activating them, and when they're activated on a chronic basis, in the digestive system, leaky gut develops. I'm afraid I don't know enough about it to know how to reliably and safely interrupt the sequence of events, because it tends to become self-perpetuating. I would think, though, that avoiding the most common food and drug antigens can prevent the feedback that causes the process to become self-perpetuating, which would lower the risk and/or slow the development progress. The tricky part is that we can't just completely inactivate mast cells, because they're required for a lot of natural processes, (such as healing - to say nothing of controlling invasive pathogens). But I have a hunch that being able to control the extent of their activity will be the key to controlling/preventing autoimmune diseases at some point in the future.

The reason why avoiding food-sensitivities should help, is because properly digested food doesn't result in a bunch of toxic peptides that can't be broken down, and that appear to the immune system as foreign invaders, if they get into the blood stream. Gluten, on the other hand, always results in toxic peptides, because we can't completely digest it - nobody can. Those individuals who don't have leaky gut, though, don't have any problems with it. Nor do they have problems with any other food-sensitivities.

In fact, we can't have food-sensitivities without leaky gut. According to research, absolutely everyone who has food-sensitivities, has compromised intestinal permeability. Think about that. Here's a link to a reference to verify that claim:

http://www.ncbi.nlm.nih.gov/pubmed/16880015

Tex