Allergy testing?

[legalbeagle]

Hello,

I'm new here, and this is my first post. After struggling with symptoms and specialists for 9 months (longer, really, if I think back) I was just diagnosed with lymphocytic colitis based on a biopsy taken during my colonoscopy last week. During this time I was also diagnosed with hyperthyroidism, which is being treated. I am a 29-year-old female.

I feel strongly that I have food triggers that are causing this, but I don't know what they are - basically my digestive system seems so out of whack that anything upsets it in one way or another.

I am set to see an allergist for testing next month. Will that tell me anything? I understand that allergies, sensitivities, intolerances, etc. are different. But I have tried various elimination diets (some of my neurological symptoms which were likely thyroid-related were initially blamed on migraine, so I did experiment with food) with no success in finding a culprit. I was hopeful that an allergist may be of some value. Appreciate any input anyone can offer.

Additionally, my biopsy was negative for celiac. I have also had celiac bloodwork done which showed the following:

Endomysial Ab, IgA Negative
t-Transglutaminase, IgA <2 Range: 0 - 3 U/mL
Immunoglobulin A, Qt. 247 Range: 70 - 400 mg/dL

Based on this, the doctors tell me I am able to safely eat gluten; however, they've given me a lot of erroneous information so I was curious to see if any of you had any thoughts to offer on possible gluten intolerance.

Thanks in advance for any input!

[Stanz]

legalbeagle,

I'll be the first of what no doubt will be many here to offer my opinion.

First of all, pretty much all of us have tested negative on the celiac blood test. It is an outdated and pretty worthless test unless you have the 2 main celiac genes. Most of us are gluten sensitive genetically and most of us have had the tests done by Enterolab since we found this site and you can go to the section here for test results and see them. I went through the Elisa testing, which showed only a few scores in the mid range and most of them were for foods I ate all the time so the Dr. at the time told me that often you will show a higher score for foods you eat often and to ignore them. Wheat wasn't one of them. I had the patch testing and was only apparently allergic to the patch, despite that my skin was peeling off my hands and feet in sheets at the time.

I'd been gluten free for 5 months when I sent my samples in to Enterolab and was still highly reactive to gluten and have 2 gluten sensitive genes, one of which I passed to my daughter and her son who also inherited another gluten sensitive gene from their Dad's side.

Do some reading here and you will see that we've all been where you are now and you have found a great support group. We are not all the same, we have different intolerances, but gluten is #1.

Connie

[tex]

Hi LB,

I agree with everything that Connie wrote, and I apologize for being redundant (we were apparently writing at the same time), but I don't have time this afternoon to edit my post, so please ignore the redundant parts.

Welcome to the board. You are quite correct -- when the genes that predispose to microscopic colitis are triggered, genes that predispose to certain food sensitivities are also triggered at the same time, especially genes that predispose to gluten-sensitivity. Unfortunately, the celiac genes (DQ2 and DQ8) are not the only genes that predispose to gluten-sensitivity. In fact, every gene except DQ4 predisposes to gluten-sensitivity. And just as unfortunately, the celiac screening tests will not detect the type of gluten-sensitivity that we have (non-celiac gluten-sensitivity). Consequently, the tests that virtually all GI specialists, allergists and immunologists offer are pretty much worthless for detecting the food sensitivities that we have, because the antibodies are generated in the intestines, and they do not show up in the blood in numbers sufficient to be detected by the low-sensitivity blood tests that are available.

The only tests currently available that will accurately and reliably detect food sensitivities that cause digestive issues are offered by EnteroLab in Dallas, Texas. You can order their tests online or by phone, and they will send you a sample collection kit, after which you freeze the sample and then ship it back to the lab by overnight delivery. Currently, no one else offers any tests that are helpful, except for Signet Labs. Signet offers mediator release testing (MRT), but this is a different type of test, and not very specific. It requires adopting an elimination diet and then testing each food individually, (according to a recommended preference order), to see if you are actually sensitive to them).

The EnteroLab tests, on the other hand, are very specific and repeatable, and you can count on the results being accurate (assuming that you produce normal amounts of IgA, and according to your test results, you do produce a normal amount of IgA immunoglobulin, so the tests would be accurate and reliable for you).

http://www.enterolab.com/

Frankly, I doubt that you will learn anything worthwhile from an allergist, unless you want to treat skin problems or classic food allergies that cause anaphylactic reactions. They are typically not helpful for those of us trying to control MC.

Most of us here (except for a few who also have celiac disease) will always test negative to the classic celiac blood tests, but most of us are highly sensitive to gluten (just as sensitive as the average celiac), and almost as many of us are also sensitive to casein (the primary protein in all dairy products). Slightly over half of us seem to be sensitive to soy and all legumes. Some of us have other sensitivities, of course, such as eggs, yeast, or corn, for example. The key to remission by diet is that we have to eliminate every food to which we are sensitive, all of the time. That's why eliminating one food from the diet for a while, and then reintroducing it back into the diet while excluding another food will not provide any benefits. We can't track down food problems without cutting out all of the potential problems first, to establish remission, and then trying them one at a time to discover the ones that cause adverse reactions.

Before I cut gluten out of my diet, I couldn't tell that it was a problem -- everything else seemed to make me sick. Once I cut out the gluten long enough, though, (months, not days or weeks), then I began to make progress, because my gut began to heal a little so I could tell what else was causing problems for me.

Again, welcome aboard, and please feel free to ask anything.

Tex

[legalbeagle]

Thank you both so much for your responses! I am so glad to have found this site.

Connie, you mentioned genes and genetic testing - is EnteroLab the best source for that or will just any old lab do that? I am seemingly the only person on either side of my family who has any autoimmune issues, food sensitivities, etc., so I'm curious about what genetics could tell me about how this happened.

Tex, you mentioned that gluten and casein are the big offenders for most people here, but that some have others as well. Do most people start by eliminating gluten and casein and then cutting out soy, egg, etc. if they don't experience complete relief, or do most people cut out all of the potential triggers you named all at once? I have eliminated gluten and dairy (just this week, so no changes yet, obviously).

Thanks for the info about EnteroLab. I'm very interested in that, although I'll probably go ahead and do the allergist's tests as well since insurance is paying for it and I have other (environmental) allergies, so I might as well see if they've got anything useful to say. Not holding out great hopes, though, and will probably go ahead with EnteroLab, too.

My gastro has me on 800mg of Asacol 3x a day, probably for two months (assuming I don't have problems with it) and then we'll reevaluate. I would definitely prefer to achieve remission by eliminating the underlying trigger, but I'm willing to try the meds, at least for now. The hyperthyroid has been playing havoc with my digestion as well, so I'm pretty desperate to get my system calmed down in general.

Thanks again for the warm welcome and all the info!

-Sarah

[Stanz]

The genetic testing that is done by Enterolab is analyzed by the American Red Cross, the same source that does the analysis of genetics for bone marrow transplants. No other lab will do that and they saved the life of my friend who found a bone marrow donor when she was within months of death and now she's out shopping for a wedding dress and getting married this summer. So, yes, as far as I know, Enterolab is the only place I've seen that will do the genetic tests.

I am far from an expert in genetics and obviously if you follow science and news stories you see lots of families where one kid has a genetic disorder and another doesn't. I can look at my family history as the youngest of 10 kids and can pretty well birdseye that at least 7 of us inherited the double genes for gluten sensitivity and that even in the case of one who didn't directly get BOTH genes, at least one of those resulted in a schizophrenic daughter and an autistic grandson and their Grandma, my 2nd oldest living sibling, is pretty amazingly healthy and is 83 years old now and looks 65. My mom had "arthritis" all her life and I'm the baby, but 2 of my siblings have died from colon cancer, my mom from stomach cancer and my paternal GF from a bowel obstruction, so clearly there's some sort of history here.

I don't want to overwhelm you with stuff, but realistically we are all human and all of us humans have our own family diets we grow up with and respond to. My family were dairy farmers and I'm the resident believer here that food intolerances and the damage they do to our intestinal tract make us vulnerable to bacteria and that ultimately it is that bacteria that presents itself as re-occuring infections we take antibiotics for them that can cause MC, or it presents as skin disorders or arthritis or any number of autoimmune disorders. Reality is that most of us here have had one autoimmune disorder or another, most of us can track it back to a young age.

Western Med has been wonderful at giving these autoimmune disorders a name and then a DRUG to fix it, my personal favorite is Fibromyalgia and there are many other "rule-out" diagnosis diseases out there that "they've got a drug for" and reality is we better all look out for ourselves because even the supposed experts of departments in our teaching hospitals and our PCP's weren't trained to be healers, they were trained to look at a question and answer sheet and add it up and prescribe a medicine that comes up on their computer screen. And that's why you're where you are and why all of us here are where we are.

Sorry if this sounds negative, I type as fast as I talk and this is something I'm passionate about and I'm not going to proofread this, it's how I feel.

Connie

Editing here, said I wasn't going to proofread, but I walked away and then thought of this and wanted to add it. I don't think our medical doctors don't care. I think they spent a fortune to become doctors and before that they were full of passion and curiosity and wanted to do great things and then they spent the next 10 years of their lives paying back their student loans and being given 15 minutes per patient where they were supposed to do their job and at some point they just lost sight of who they were and they lost that curiousity to solve problems and now they are lost in the huge medical system and they are besieged by drug dealers who "advise" them and they don't have the time to look at reality.

I have a nephew, the son of my sister who now walks with a cane, who is an MD. He had a bowel resection at 37. He has 2 daughters, both of them have Crohn's. One of his daughters just graduated from Medical School - just a few hundred miles from University of Central Florida where Dr. Naser, et al, did a huge study on Crohn's and found that most of the participants were positive for mycobacterium avium subspecies paratuberculosis (MAP) and they are the first EVER to develop a blood test for it. Their patent was sold to a drug company who then developed an antibiotic cocktail for it and started testing it in the US in Sept. '11 - it's a 2 year study. Since then 2 studies have been done where they have found MAP in 100% of the participants who had previously been diagnosed with Crohn's.

I'm a believer that anyone with a gluten intolerance and pretty much anyone who has MC, also has a bacterial problem that usually presents itself first and I'm waiting for that cocktail, because IMO it was MAP that changed the history of my family when my paternal GF had it and eventually died from an intestinal obstruction. I've written lots about it here.

[tex]

Tex, you mentioned that gluten and casein are the big offenders for most people here, but that some have others as well. Do most people start by eliminating gluten and casein and then cutting out soy, egg, etc. if they don't experience complete relief, or do most people cut out all of the potential triggers you named all at once? I have eliminated gluten and dairy (just this week, so no changes yet, obviously).

Most new members are reluctant to change their diet, so it's difficult to convince them to even cut gluten from their diet. A few do an elimination diet, and then after they reach remission, they try to reintroduce foods, one at a time, to see if anything they are avoiding can be safely added back into their diet.

Early on, I cut out gluten and then experimented with avoiding other foods, one at a time. It takes a long time to heal from the gluten damage, but after a few months, I could see some trends in a food and reaction journal that I kept. I stumbled around this way for about a year and a half, until I finally bit the bullet and cut out everything that seemed suspicious, and within a couple of weeks, I was in remission. I stayed on a very restrictive diet for about a year and a half, and then I was able to begin adding foods back into my diet.

I believe that Prometheus Labs also does a gene test, but they charge almost twice as much as EnteroLab, and they only check for celiac genes. Enterolab checks for a bunch of genes that predispose to gluten-sensitivity ans microscopic colitis.

Incidentally, one of our polls shows that the members of this board are approximately seven times as likely as someone in the general population to have a thyroid issue. Thyroid problems are very common with MC. I'm hypothyroid, for example.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783

Tex

[Zizzle]

Welcome Sarah!

I am seemingly the only person on either side of my family who has any autoimmune issues, food sensitivities, etc., so I'm curious about what genetics could tell me about how this happened.

I was diagnosed with LC at age 35, and also have no family history of autoimmunity, food sensitivities, etc. BUT, I had a grandmother with obscure thyroid issues, and another who claimed pasta and bread didn't agree with her. Turns out I have one celiac gene and one gluten sensitive gene, so the genes are in my family. The others were just lucky not to have theirs triggered yet. My trigger was a combo of GI infections growing up abroad (altered gut flora), antibiotic and NSAID use after my first pregnancy, and the fact that I have joint hypermobility -- which is linked to intestinal permeability. I also had an extremely low level of Vitamin D at diagnosis (17, and it should be over 30). Anything that causes intestinal permeability, including several medications (i.e. antidepressants, PPIs for heartburn, NSAIDS-ibuprofen, aspirin, etc.), opens the door for developing food sensitivities, and thus, MC. Even vaccines and infections can stimulate and alter your immune system in mysterious ways that lead to triggering of these genes and developing autoimmunity. Unfortunately, once these genes are triggered, your only option is to eliminate your food sensitivities, if you want to get better for the long-term.

My GI offered Asacol and I declined. I used Pepto tablets for a while, but cutting out gluten, dairy and most soy, after getting my Enterolab results, made the biggest difference. Taking supplements, avoiding too much fiber and alcohol, and eating as much organically grown/non-processed food as possible has all helped in my healing.

[legalbeagle]

Zizzle, I also have joint hypermobility - I had no idea that there was any relationship there. And just like you, I had a grandmother who had certain foods (fresh bread, so maybe yeast?) that "didn't agree with" her. So I guess I do have more of a predisposition that I'd realized.

My gastro asked about NSAID use, but I really only take Aleve maybe once a month for the occasional sinus headache, and prior to this and the thyroid I wasn't on any other meds. I've had a sneaking suspicion that a virus might have kicked this all off - we lost power for over a week last year following an earthquake and hurricane, so who knows what nasty germs were breeding. Immediately after, I had some sort of stomach bug, and that's when everything (thyroid and intestines) started going haywire. That said, I've been having trouble with steel cut oats for close to two years now, so who knows.

Tex (or anyone), how do people know when they've reached remission?

[MBombardier]

Hi Sarah! Welcome!

For me, remission is when I can eat confidently (avoiding all the foods you see under my photo), have normal BM's, and live my life with energy, a sharp mind, and no pain.

I started by cutting out gluten, and that worked well for about four months. When I started having problems again, I found out here that I was likely reacting to something else as the gluten antibodies had decreased to the level my body could start working on the next worst intolerance. That one turned out to be soy. It took about nine months, altogether, to figure out everything I shouldn't eat. The last was dairy. I was asymptomatic to it until I stopped eating it for about three weeks when I got serious about the Paleo diet. Then one day I decided it would be nice to have cheese on my omelet...

Some people eliminate everything they might be sensitive to right away and then add things back slowly. That takes discipline I don't have. All of our journeys are different.

Welcome, again!

[tex]

Tex (or anyone), how do people know when they've reached remission?

Marliss pretty well defined remission. Basically, when all of our symptoms are gone, and the cellular histology of your intestines is normal, we are in remission. That means no D, no C, no headaches or body or joint aches or pains, no unexplained fatigue, and no brain fog or other neurological symptoms.

Here's another way to tell (from one of my posts in response to another thread):

Here's one of the profound things that struck me about MC:

Prior to the onset of my symptoms, whenever I went shopping, everyone else was always impeding my progress around the store, because they were in no hurry, and I was. After my symptoms began, I was the one holding up every one else in the store. After I reached remission, once again everyone else is too slow, and I'm impatient to get around them with my shopping cart.

When we reach remission, many/most of us realize that we feel better in general, than we've felt in 15 or 20 years.

Tex

[legalbeagle]

Just wanted to post an update. I saw the allergist for allergy (skin) testing and (in addition to most environmental allergens, which I already knew) am allergic to:

chicken, cantaloupe, coconut, pineapple, watermelon, almond, cottonseed, malt, oats, rye, wheat, yeast, coffee, black pepper, cinnamon, sesame seed, navy bean, peanut, soybean, cauliflower, lettuce, spinach, and tomato. I was not tested for seafood, pork, beef, or mushroom, because I don't/won't eat those.

On one hand, this is pretty unfortunate for me, since many of those are some of my favorites, but it has made an enormous difference in my LC symptoms. Since being diagnosed with LC, I had tried an elimination diet, going GF/DF/SF, and avoiding anything that has a reputation for being "difficult" to digest, like spices and coffee. I had been better but still had flares, which I think were probably due to the fact that I was eating so much chicken.

I had been about to start Entocort (Asacol gave me hives) when I had this testing and since getting these results I have felt enough better (at least so far) that I don't need medicine. I was really not expecting to get so much useful information from an allergist. I also reintroduced dairy and seem to be fine with it - I think I was blaming dairy for what was actually the thing I ingested WITH it - coffee, cereal, cookies, etc.

I seem to be in the minority here, having so many IgE food allergies instead of (or in addition to) the sensitivities many of you have. Any advice or insight?

[Zizzle]

Intestinal permeability certainly has the ability to lead to IgE-mediated allergies. It may be you are more predisposed to developing IgE reactions, instead of, or in addition to, delayed IgG or IgA reactions. I also have trouble with sesame seeds and I wonder if it may be an allergy. I had skin patch IgG testing after my LC diagnosis, and it was all inconclusive. My only other known allergy to anything is to nickel.

[Leah]

HI LB. Your results are interesting. it looks like gluten and soy are your biggies. Since you can't eat chicken and you DON'T eat beef, pork or seafood.... what do you eat for protein? Protein helps the healing process. It's great that you don't need the meds. I did have to go on Entocort, but have been able to ween down to a very low dose.

Since tomatoes are on your list, you may want to pay attention to how you react to all "nightshades" ( tomato,potato,eggplant, and peppers)

Most of us also can't tolerate most RAW fruits and veggies when we are trying to heal. No salads. too hard to digest. This was very difficult for me! Now, five months later, I have been able to add back a little salad and fruit. And also beans. I also think I react to canola oil, so now I stick to olive and coconut ( sometimes safflower).

This forum was a lifesaver. Welcome and keep us posted on your progress

Leah

[legalbeagle]

Turkey and chicken eggs seem to be fine, so those are my main sources of protein. My doctor has suggested some dairy, too, now that I seem to be tolerant of it.

Thanks for the warning about nightshades - I've never done very well with peppers, but potatoes seem to be okay. So those and rice are my main starches.