JenKuz

Thanks so much for the extra information, Nora.

Miriam--I thought I was the only one out there!

Yes, it seems we both have similar manifestations; I also had a really high fat malabsorption score. I suspect it still is, since I've had a rough summer for glutening, and my responses seem to be getting stronger. I haven't quite been able to bring myself to stop eating out but I think I'm going to have to.

I feel pretty sure that I've had gluten intolerance in a mild form for a while, but the really severe symptoms seem to have been sparked by a bout of food poisoning, which was a rather unfortunate red herring.

I find I'm pretty susceptible to food illnesses now; more than I used to be. Sometimes it can be chalked up to glutening, but other times I know its food poisoning because of fever and vomiting, and it happens much much more often than it used to. I don't know if that's just from the damage to the guts letting more viruses and bacteria in, or a frenzied gut immune response, or what, but it's not fun.

My diagnosis was, as for most people, problematic. I had an endoscopy and a colonoscopy. At then endoscopy, the doc saw inflammation in the stomach, and took a biopsy to rule out h. pylori. But for some reason he decided not to scope any further down than the duodenum, and he didn't take any biopsies of the small intestine. In the colonoscopy, in histo, they found high numbers of eosinophils.

The doc said that was probably left over from the parasites I had "probably" caught while in Africa. From that I gleaned that the doc was a moron, because eosinophil response is limited to 6 to 12 hours in circulation. I had returned from Africa a year before, and had taken full rounds of anti-parasitics on returning, as a precaution. I had had three rounds of negative tests parasites (and assorted other gut infections) over the course of that year. So what he thought eosinophils would still be doing hanging around, I don't really know.

My suspicion is that they are involved in the on-going gluten/soy intolerance. Eosinophils normally respond to IgE type antibodies more than IgA, but they do have IgA receptors, and have been shown to respond to the binding of those receptors, so it seems that IgA involvement is frequently overlooked.

Now, my doc said that the gastritis was probably GERD and inflammation was visible in the esophagus. I dunno. Wicked heartburn is usually my first sign that I've been glutened, and it always sends me re-reading ingredients lists if I get it. This is the daggers-in-the-chest variety, just to be clear, not the burning-in-the-throat variety. I sort of wish the doc had taken a biopsy of my esophagus. Right when I cut out wheat, before I'd started to heal, the heartburn was awful. It could lay me out for a night, because it hurt so badly. I posted a couple times on that subject looking for tips on relief, and those topics are out there somewhere.

So, hmm, what else about my symptoms? I don't really know. Before I cut out gluten, I was nauseous all the time, and had a lot of pain in the intestines. Now, when I am glutened at home, or suspect that I have been eating out, it tends to be more lower-GI symptoms, except for the heartburn. The nausea isn't as bad; or at least, it's not as constant

I've found, given the high fat malabsorption, that when I'm glutened I'm really sensitive to eating too much fat. It makes things much, much worse for me. I also feel like I'm really sensitive to bacterial overgrowth, because usually eating too much starch also seems to prolong symptoms when I've recently been glutened. No gluten/no soy/low fat/no starch is not a particularly fun or easy diet, but I feel so much better that it becomes appealing as a dietary solution. Lots of lean protein, yogurt, fresh vegetables (helps if they're mostly cooked right after a glutening), olive oil, and it's usually not long before I'm back on my feet.....

Naturally, Fantastic Foods is the brand all the stores I go to seem to carry It's as if I forget the soy sauce -- or can't get my mind around it -- and so every couple months I'll pick it up, read the label, and say, "Oh, yeah." Maybe now I've mentioned it to someone else I'll remember

Is there a recipe you like? I tried making falafel once from mashing chick peas and it was a mess; what's worse it tasted wrong. I wish I had the recipe for this falafel I got for breakfast at a hotel in Egypt. They fried it fresh right in front of you and it was heavenly (more flavor & moister). I kept getting more even though I wasn't hungry any more.

I've searched a bit online, and what I'm finding calls for mashed chick peas & wheat flour. I admit I only looked at a few hits. I figured it would be easier to ask you for your recipe

I had a similar experience with the falafel at a little Moroccan joint in Berlin *sigh*.

Unfortunately, I picked up the fantastic foods variety at the store recently and read the ingredients, but apparently not carefully enough. I've learned that Casbah brand and Sadaf brand have wheat flour, and Near East brand has wheat germ.... and Manischewitz is out too The soy sauce always slips past me on labels. So I actually glutened myself on the stuff just after posting the recipe, as it happens..... hence I will NEVER forget that it has wheat in it!

I think the flour should be eliminated from the recipes that use mashed canned garbanzos. Or replaced with half the amount of corn starch plus half the amount of masa flour.... seems like that would allow a reasonable textural replacement?

I found this recipe that doesn't call for flour:

RECIPE INGREDIENTS

1 cup dried peeled fava beans (7 ounces), soaked overnight

3/4 cup dried chickpeas, soaked overnight

1 small onion, finely chopped

1/3 cup minced flat-leaf parsley

2 tablespoons minced cilantro

1 garlic clove, minced

1 teaspoon baking powder

1 teaspoon kosher salt

3/4 teaspoon ground cumin

Pinch of crushed red pepper

3 tablespoons water

Pure olive oil or canola oil, for frying

Tahini Sauce (see recipe)

RECIPE METHOD

Drain and rinse the favas and chickpeas and put them in a food processor. Add the onion, parsley, cilantro, garlic, baking powder, salt, cumin and crushed red pepper. Pulse, scraping down the side of the bowl, to form a coarse paste. Add the water and process until the mixture is gritty but fine and brilliant green. Scrape the paste into a bowl.

In a medium saucepan, heat 2 inches of oil to 350 degrees F. Scoop rounded tablespoons of the falafel mixture into the hot oil and fry in small batches until browned and crisp, about 2 minutes. Drain on paper towels set over a wire rack and serve hot, with Tahini Sauce.

Recipe created by Nancy Harmon Jenkins.

Recipe reprinted by permission of Food and Wine. All rights reserved.

Otherwise, as near as I can tell, Orgran makes a mix, and Bob's Red Mill makes a garbanzo-and-fava flour. They offer this recipe:

Ingredients:

1 cup Garbanzo Bean Flour

1 Tb Sea Salt

2 tsp Ground Cumin

1-1/2 tsp Turmeric

1 Tb Freshly Crushed Garlic

3/4 cup Water, hot

1 tsp Baking Soda

1 Tb Chili Pepper, Chipotle (Ground)

1 tsp Mustard Seed

1 tsp Garam Masala

1 Tb Crushed Fresh Ginger

2 Tb Finely Chopped Onion

1/2 cup Frozen Spinach, pressed & drained

2 cups Vegetable Oil for frying

In a bowl, mix bean flour, baking soda, salt, chili pepper, cumin, mustard seeds, turmeric and garam masala well. Add hot water, stir well. Gradually add garlic, ginger, onions and spinach. Mix well and let mixture rest for about 5 minutes.

Heat 2 cups of oil in a deep fry pan. When oil is hot, drop 1 tablespoon of mixture into hot oil (about 6-8 balls at a time) and cook for about 5 minutes or until balls are golden brown. Remove and drain onto paper towels.

Falafel can be kept warm in oven while frying remaining balls.

Great served with this dipping sauce:

1/2 cup plain lowfat yogurt

1/2 cup lowfat or nonfat sour cream

1 small cucumber (peeled, seeded and finely chopped)

1/4 cup fresh parsley finely chopped

1/2 tsp Bob's Red Mill dried dill weed

In a small mixing bowl blend all ingredients together. Enjoy.

I think the dry ingredients could be rather easily assembled and kept on hand for quick falafel

I'm a vegetarian, so ordinarily I wouldn't comment on a thread like this

I do want to warn people though ... some falafel mixes contain wheat. Always read labels!

It's true, Hathor. Fantastic Foods falafel mix has soy sauce in it (why? I can't fathom.....it's not like soy sauce is a traditional and indispensable flavoring for falafel). I contacted Casbah and Manischewitz to find out whether theirs are gluten-free.

You can make your own with garbanzo flour.

Glad it worked for you. Wouldn't work for us because of our dairy and egg allergy. I don't make meatloaf very often because it seems like such a pain to do. The last couple of times, I made a recipe that I found online that called for oats. I used gluten free oats and I processed them to a powder in the food processor before using. The recipe called for tomato juice to moisten. I added some chopped spinach, carrots, celery and onion to the mix and topped it with chili sauce. Subbed in flax meal for the egg. No dairy was called for. I made individual meatloaves because I wasn't sure how well the mix would hold together. It held, but I'm not sure it would work for a big loaf.

Yeah, usually it's something you'd do to use up old bread, right? Well, I actually had a reason to make it, which is going to sound a little strange, but if you go to the following link, you'll see what my objective is:

Open Original Shared Link

It will be for my (non-gluten-avoiding) boyfriend for his birthday. He adores all things red meat, and this is more or less the perfect thing for him. However, I had to practice getting a gluten-free meatloaf right before attempting to make a cake with it.

Like I said, though, I think it will make a perfect binder for crab cakes and salmon patties, and I'm going to try it as breading on fried things like green tomatoes and eggplant.....

My 12 year old son was diagosed at the beginning of the summer with celiac. ( He also has diabetes) What are the best gluten free cookbooks that you have found?

Thanks

Judith

I don't know many of the cookbooks, but glutenfreegirl has a marvelous blog....

Open Original Shared Link

With a lot of recipes. She's coming out with a cookbook soon that I'm drooling over. Can't wait for it to come out......

I wanted to make a meatloaf the other day; just had a crazy craving, i dunno. So I tried to think of what would be a good binder. I did NOT want to go the Dr. Atkins pork rinds route. So I decided to try falafel mix.

It worked exceptionally well. WAY better than saltines. I think this is one case where the gluten free alternative is in all respects superior to the traditional variety.

I plan to try the falafel mix for crab cakes (which I sorely mix), and I suspect it would make a really nice breading for fried fish, zucchini, etc.

Here's my recipe:

Glaze:

1/4 cup brown sugar

1 small can tomato paste

2 tblsp worcestershire

hot water to thin to taste

Loaf:

1 onion, diced very fine

3 cloves roasted garlic or 2 tsp minced garlic

2 eggs

1/2 cup yogurt

1 tsp horseradish

1 tsp dijon mustard

2 tsp worcestershire

salt (beware of salt in falafel mix when salting this dish)

pepper

thyme

oregano

1 1/2 cup falafel mix

1/2 pound reduced fat pork sausage

1/2 pound ground veal

1 pound ground chuck

Dice onion and saute with garlic in a drizzle of oil (as little as possible, there's enough fat in this dish as it is Smiley). When cooled, whiz in the food processor (optional).

Mix eggs, yogurt, and all seasonings together. In another bowl, combine the meats carefully, to mix together without squeezing or overworking. Add falafel mix and onion to egg mixture, and stir till just combined, then mix together with meat. Form into loaves.

If even remotely possible, bake in a dish that drains. Bake at 350 for 35 to 40 minutes.

Mmmmmmmmmmm, meatloaf....

Hi all,

I made a very simple popover this morning. I haven't done much baking since being diagnosed, and so I don't have all the gluten-free flours in the pantry.

This popover was inspired by a "quiche" I made last night. I did it with no crust, and then stirred some corn starch into the egg mix. The whole thing puffed up well, so I tried to adapt it for the purpose of popovers.

So, I stirred 1/8 cup of corn starch into 1/3 cup of milk, then beat in two eggs and some salt. Buttered a cup, then dropped some butter in the middle. I put it in a 400 degree oven, and checked on it about 45 minutes later.

Well, the thing had darn near tripled in size! So the recipe above would be appropriate for two popovers. The texture in side is really good, and the top crisped a little, though not as much as could be desired. Still, it was nice to have a popover.......

Has anyone ever had negative results from the tests done at EnteroLab?

Seems like everyone I've read about on these forums has always had positive results.

Do they always give positive results to everyone? Seems like some people might not test positive?

Just considering all my options; I'm new to all of this & trying to figure out what to do next!

Thanks!

Hi Horsegirl,

I think what you're noticing is a thing called "selection bias." The people who come here are those who have either directly diagnosed celiac disease, or else unresolvable gi symptoms.

The tests that enterolabs does are identical to the blood tests for anti-tissue transglutaminase and anti-gliadin antibodies. They use the same antibodies in the assay, and the same reagents. I looked into this before having the tests myself. the only difference is that they test stool instead of blood. This actually makes more biological sense, as the igA class of antibodies are produced basically only in the intestines (and breastmilk). If you accept the blood test, then you should accept the enterolabs tests as well.

1 in 133 people have celiac disease, but most are undiagnosed. Enterolabs tests are more sensitive than the other test, which only diagnose about 1 in 10 of the people who have gluten intolerance problems. Many of those people come here for help, so its no wonder that many of the enterolab results for people on this board are positive....

Dear celiac friends,

I've been waiting for a week to get the results of my blood work. Today it finally arrived!

Tissue transglutaminase <1 (ref.range <7)

S-Gliadin IgA 1.2 (ref.range <7)

My doctor claims it is normal, but I am worried by the fact that I do have Gliadin IgA-antibodies at all, as I have understood that they are less sensitive but more specific to celiac. I would feel better with no antibodies at all (and a working stomach..)

So, does anybody have any ideas on what to do? My mother has just been diagnosed with celiac disease (she is very obese, and I don

I had eosinophils in the large bowel. I did some investigating and found some literature that suggested that eosinophilia can be mediated by IgA. Ordinarily, eosinophilia is associated with "genuine" allergic responses, wchich, by definition, are mediated by IgE resulting in histamine release from basophils and mast cells. Eosinophils relaease "granules" that mediate inflammation.

Eosinophils have receptors for different antibodies (the antibodies sort of tell them what to do, when). When bound in a certain way, they release histamine. They have the most receptors for IgE but also have receptors for IgA. Because they are evolutionarily involved in mechanisms to fight intestinal parasites, it makes sense that they would communicate well with the primary antibody made in the gut.

How the eosinophils get called to the esophagus or gut in high numbers is an open question....My guess is that given the inflammation in the gut from celiac autoimmunity, otherwise-harmless immune cells for food-related potential antigens are "primed' to attack where they wouldn't have before. So new ("genuine") allergies develop.

Anyhow, once they're there, they can bind to IgE *or* IgA, release inflammatory proteins, and generally makes things uncomfortable.

I found myself hungry but nauseaus at the same time through much of the first year and a half of symptoms. I ate a lot of carbs, craving cakes and whatnot before I cut out wheat, and then potatoes, rice, etc. I think this was because of the fat malabsorption. I had a fairly high score on the fecal fat test, as well, and given that my body was not absorbing fats, I think I needed some extra form of energy in order not to starve.

Here are my experiences. Rice did me well. Rice puddings and things like that were very good on my stomach, and I lived on risottos for a long while.

At one point I went on the "specific carbohydrate diet" which really helped a lot. It was hard the first couple of days, because my body really need energy, but I fed it lots of honey, bananas, and eggs and other protein, and before long I was able to digest unsaturated fats with ease. Even now I get sick if I eat too much transfat or saturated fat. Olive oil, avocados, and milk fat go down fine, though (the milk fat is moderate, almost all from yogurt). Butter and red meat made me feel too awful to describe, and still do to some extent, so I only eat them when I have a presumably iron-associated craving for beef.

Oily stools with mucus is a classic symptom of Celiac disease. It is true that many people with celiac disease have diarrhea, but others have constipation, therefore diarrhea is not a requirement for diagnosis. If she responds well to the diet then I would keep her on it because that is direct proof that gluten is at least part of her problem. Keep in mind that those who are newly diagnosed with celiac disease are also initially lactose intolerant because the villi that are flattened are the same cells that produce lactase (the enzyme that digests lactose).

When i first started having symptoms, i had this problem. Stools were loose, mucously, fatty, full of undigested food, and I always felt very feverish and uncomfortable passing them....would sit on the toilet for long periods, not constipated, but clammy and in pain.....

Hi Whattodo,

When I had my endoscopy, it was something similar. I already had negative blood tests for antigliading IgA and anti-tissue transglutaminase IgA. The doc took the scope through the stomach and duodenum, and then stopped. He saw inflammation of the stomach, took a biopsy of that, but no biopsy of the small bowel.

There are problems:

1. Damage from celiac is often spotty. If the only look at part of it, they might miss damage later. When testing for celiac is indicated, it is recommended to take several biopsies from the whole length of the intesting.

2. Damage from celiac presents more frequently in the lower parts of the small bowel. In my case, he didn't look past the duodenum, meaning that although it "didn't look like celiac" to him, he may have seen only severe cases of celiac in which the full small bowel looked bad to the naked eye. In earlier stages, celiac damage can be lower, patchy and microscopic.

3. Damage to the small bowel is part of an advanced disease process. Symptoms generally begin years before this damage is apparent. In the use, biopsy of the small bowel is considered by the medical establishment to be the only truly definitive, or at the least the "gold standard," test for diagnosis. However, celiacs in the US are diagnosed *on average* ten years after symptoms begin. This should say something about the delay our mode of testing imposes on patients.

I went through a private lab here called Enterolab. A lot of people on the forum trust it, although it isn't quite widely accepted in the medical establishment as yet. I vetted them rather thoroughly. I've worked in similar labs, and so I felt competent to evaluate their methods. They are based on very sound biological prinicples.

They do tests for anti-gliadin and anti-ttg, just like the blood tests normally done. In fact, they use the exact same assay and identical reagents to the blood tests. The difference is that they test stool instead of blood. Why is this? Because IgA is manufactured primarily in the gut. Hence, testing stool is far more sensitive (picks up far more positives) than testing blood. If you have either of these types of IgA, whether in stool, blood or skin, you definitely have autoimmunity of the type seen in celiac, regardless of the present state of your gut. If you gone seeking help because of symptoms, then obviously some damage is there whether picked up on your scope or not. ERGO....Celiac. Or something very much like it.

Although I can't speak to CC on any specific ice cream, the fact is that most flavors of virtually every brand of ice cream are gluten-free, excluding, of course, obvious things like cookies and cream. If the ice cream has wheat the wheat has to be listed, and if it has barley, you'll almost always find it listed as malt or malt flavoring.

As to the original poster, the potato chips were much more likely to be the cause of he trouble than the Breyer's vanilla. Over the years I've read of many problems with CC in Lays products.

richard

I don't know what differences in standars there are between Germany and here....but when I was there over the holidays, I noticed that many lays brands had wheat products listed in the ingredients (!) where the same flavors...well, I can't really compare exactly. I never saw wheat in corn chips here before, but didn't really eat them that often.

And now I just assume that whether it's listed or not, wheat is in the flavoring of most flavored corn-chips. In fact, wheat was listed in almost every brand of chip I looked at there....it must have been used in the flavor coating. It really made me wonder whether some chips here also have it, and maybe haven't been labeling. Anyhow, if I remember, it was in BBQ, Cool Ranch, some kind of spicy chip, .... and you know, they can't possibly have a separate facility for each flavor they make so chances for CC must be high....

(Of course, to be fair, it's also possible that they market different formulations in different countries.)

Some people have no symptoms at all, but have total villous atrophy (meaning their intestine is as damaged as it can get). Other people have crippling symptoms but their intestine only shows minor damage. And every variation of the above. Severity of symptoms doesn't equal severity of damage.

Some people start reacting much more strongly once they have been gluten free for a while. Once the immune system doesn't need to be dealing with a gluten attacker every day, it can gather some strength and REALLY react it seems. Other people never get very severe reactions. You'll only know which category you fall into once you've been gluten free for a while.

Pauliina

It's interesting, because the immune system deals with bacteria and viruses like that too. First exposure, strong immune response, second exposure, even stronger faster immune response. Every exposure after that ever faster and stronger. BUT with chronic exposure....usually the immune system "calls a truce" and responds at some kind of equilibrium level.

Oh I can do the Go-gurts! I guess Mia can finish off the smoothies and Bella will get Go-Gurts...why do things have to be "hidden" it SUCKS!

I guess I understand it if they are outsourcing the fruit product or other flavorings.... Maybe it's more responsible for them to say they can't guarantee another company's product? I eat dannon plain a lot, and I've never had problems. I sweeten it with honey or jam, or blend it with frozen banana...

I've been frustrated by the number of ice creams that have brownie/cookie/cake batter etc. in them these days....

But also, I have problems with soy. Ice cream almost always has soy. I know it's controversial about the soy/celiac links...but maybe it's worth considering that.

I know for a while there was concern about Bourbon Vanilla. People thought the alcohol in the extract was actually bourbon. But from what i understand, Bourbon Madagascar Vanilla is just the vanilla type, and no bourbon is involved.

Have/did you have both Celiac disease and gastritis.

How was your recovery.

Did the gastritis make you recovery harder?

My son has both along with a moderate hiatal hernia.

He did get glutened about a month ago when he got into pretzels.

But I still have problems with him throwing up.

I can not consistently get him healthy and reliable to not throw up.

How was you experience?

Karol mom to Billy 19 years old Down syndrome, mitral valve regurgitation, hypothyroidism and Celaic disease.

Karwei,

I had gastritis as part of my initial set of lab workups. I don't have much in the way of wisdom bout it. I wouldn't say that it has made the recovery any harder in particular; in my case, it means that when I get glutened often the first symptom is a stabbing searing pain throughout my chest. That was actually one of the symptoms that drove me in for dx to begin with. I didn't throw up much, but i had extreme nausea whenever i ate, which made the malnutrition issues worse, b/c half the time i just couldn't eat much.

but when i went gluten free, that was one of the first symptoms to resolve...

I've found that the best way to explain it to people is, "It's like a vaccine. Once your immune system is "primed" against wheat, you'll always respond to even a little bit, and usually stronger over time, just like you would respond to a virus faster and stronger once you've been vaccinated. Except in this case, your immune system is attacking your own tissues instead of a virus, and that's why you get sick."

I've run into a couple of people who have a hard time with it, but so far nobody has been unkind. It's just....you know, the handful of friends who think it's okay to eat a little bite here and there, and they feel badly for you that you can't eat any, so they temp you, "just try a little bit!" It's frustrating, but they usually mean well. Those people obviously can't get the "never, at all, even a little" part through their heads. So saying that to them over and over may not be useful after a while. So unless they're close, I just say something like, "Oh, no, I've got a (meeting/exam/paper/appointment) tomorrow and can't afford to risk being sick." That tends to make it less abstract for them.

Sometimes people ask about the symptoms. It's not always fun to explain. But I figure, if they're asking...well, I'll tell them. "Diarrhea, gas, pain, gastritis. Ultimately, my body can't get enough nutrients, because it doesn't digest my food properly." They usually realize then how serious it is.

Hi,

It was like looking at myself 8 years ago...My mom has celiac, she figured it out herself when she was 35yrs old(I was about 14 yrs old at the time), and my own skin cleared right up while I lived at home...When I moved out, not knowing that I have celiac disease, my face broke out very badly from the gluten rich diet of pizzas, hamburgers, macaroni and cheese, etc...5 years later and many doctors later, including a dermatologist, and many, many prescriptions for tetracycline(an antibiotic to clear up acne), acutane, hydrocortisone creams, sugar free diets, caffiene free diets, and anything else I could think of, we finally figured out it is celiac, and my face cleared right up when I stopped eating things with flour in them...I had the rashy acne on my face, neck, shoulders, down my back, intensely itchy skin on my face and shoulders, and if my diet was really bad, I'd get a patch of skin on my body(an arm, a leg, my scalp, it was always a different spot each time) that would hurt intensely if touched...Just try wearing clothes when it hurts to touch your own skin...Most of that has all cleared up, especially the itchy part...Anyways, what I'm trying to say is, try the celiac diet and see if it clears things up...It may, it may not, everyone is different...I've also noticed that zinc cream, the same stuff you put on a baby's bottom, is very good for my skin...It has certain medical properties in it that really helps with skin rashes and mild acne...I take a cheap face cloth in the shower(it has to have texture, not be soft and fluffy), and give my face, neck, and shoulders a gentle rub(this is the best exfoliation out there, never mind all the commercials on tv) every morning in the shower, rinse, and rub on the zinc right in the shower(it's a wonderful moisturizer if you put it on when your face is wet...Then when you towel dry after your shower, you dry off your face, which removes the greasiness of the zinc, and you're good to put on your make up...Then wash off your make up at the end of the day(again, a wet washcloth is all I use, and a mild handcream to take of mascara if I wear any), and apply zinc at bedtime...Sure, you'll glow in the dark and smell baby fresh, but you'll have lovely skin...But try the celiac diet and see if your skin clears up first...None of these beauty tips will work if you haven't found the cause of the acne...Oh, and I've also found that Olay moisturinse in the shower is wonderful for itchy skin, too, on your arms and legs, but not for your face...Hope all this helps and hope I haven't overwhelmed you...Good Luck!

Thanks so much for the tips, Ariesmama! I am going to give the zinc a try.

I actually have been gluten free since last November. However, I am not as careful as some are. I live alone, so CC at home is not much of an issue. But I eat out a lot, and I'm sure I get contaminated that way. I sort of hoped that my case would be a less-severe exception whereby I could get away with it. However, I fear that is not the case.

It's true that my occasional zits have cleared up since I cut out wheat. And in fact, the itchiness had gone away too, more or less. But I seem to be having some kind of relapse, b/c I have the steathorrea and diarrhea again, and also these rashes are back. ....... time to buckle down, I guess, and get super careful.

"I have to admit I eat out a lot, and because of that the potential for CC is high, although I eat mostly fresh unprocessed foods at home."

I would stop doing this for at least a couple of months. Eating out is very risky for us. I would eat only whole unprocessed food I prepared at home untill symptoms resolve and then if I felt I had to eat out I would only pick one place a week and see if I am reacting to what I eat there.

Boy, are you right. I'm definitely getting started on this soon. I have been trying to get myself to go back to this way of eating for a couple of weeks now. When I did it before (I was following the specific carb diet) it didn't seem that hard.

I don't know what's different now, but I feel less up to discipline-wise than before...but I need to suck it up and do it already.

You need to be tested for autoimmune diseases, they should run CRP ESR the tests for lupus and whatever else they can think, you should be checked for thyroid antibodies too, it is possible to have both Graves disease and Hashimotos at the same time, that could be causing some of your symtpoms. Lots of autoimmune diseases attack the eyes.

And you should get more strict with the diet by not eating out so often. You might want to try following the Paleo diet, it seems to work well for people with autoimmune issues.

Yeah, I always suspect autoimmune disorders. My grandma has MS (and osteoporosis, and most likely has had celiac all along undiagnosed, because she has a lot of stomach problems since childhood). My mom has RA that expresses in her eyes (uveitis and iritis). I had a bout of hyperthyroid as an infant, of unknown etiology...

But everytime I run off that list for a doc, they basically tune me out, and none of them have considered autoimmunity in my case. The eye doc said it wasn't iritis, just an "immune related opacity in the cornea," which apparently sprang from nothing out of nowhere as far as he's concerned.

I've had my thyroid hormones checked several times over the years but they've never tested for antibodies. They never identified a cause for my thyroid problems as a kid, just said that it was *probably* a virus. I don't know what they tested for back then, and my mom doesn't recall everything (it's been 28 years after all).

So. Yeah. I guess, I would love to be tested for that stuff. But what kind of doc to I get a referral for? And will they give me a referral for it based on corneal opacities and a rash? If I get a referral, will it take three months to get in? If I get in, will they actually take me seriously? How much will the diagnostic work-up cost me this time around? These are the questions that plague my nightmares everytime I think about going to the doc....I'm in graduate school and up to my eyeballs in student loans, most of which have been taken out to cover medical bills....

Hi Andrea You remember me!

I got better (very much better) after cutting out gluten. But I seem to be having a relapse now. I think it's partly because at first I was eating almost all whole, home prepared foods, and now I've gotten back into the habit of eating more packaged foods, relying on ingredients labels, and eating out, all of which are no-nos, I know.

I also (I'm ashamed, yes) have not been careful about avoiding soy, even though I tested positive. I don't eat tofu or anything, and I cut out peanut butter, but I don't avoid soy on labels. Well, I am now. But haven't been. I'm kind of hoping that will help and then I will have something of an answer...

I've thought about having enterolab tests again.

I did travel in Zambia, and that's when my problems started. Initially I suspected a pathogen like giardia, and had gobs and gobs of repeated tests for parasites, all negative (and all expensive )

As for the deficiencies, I've never been tested for any. I have crappy insurance in a crappy system, and had a pretty crappy GI doc. I have suspected some, because after I'd been sick for a bit I started having bad muscle spasms, so I suspected magnesium deficiency...

Otherwise, I guess I just don't know. I'm moving to Germany in two months, so there's only so much I can arrange for before I go. I suspect I'll find decent care there (and I will be insured there) so part of me wants to just wait until I move and then find some good integrative doctors there....

And then gorge myself on the delicious chocolate corn wafers they have

Jen,

I don't know about DH, but if you go strict, even with cc issues eating out and it doesn't get better you need to have further testing done....preferable with a good naturopath/holistic type doctor or LLMD.

The rash could be from gluten or another food intolerance. It could be from a number of things. With your malabsorption score it would seem something else is going on. Have you thought of retesting through enterolab to see if your malabsorption score has gone down? Do you have vitamin/mineral deficiencies? Have you been tested for parasite/yeast etc.?

If I remember correctly, you've spent time in other countries (forget where). Could be you picked up something that hasn't been resolved.

I didn't even notice how much my skin was affected when I started getting sick, until a friend pointed it out to me. I hadn't seen her in a couple months, and had been gluten free for the first time during that time. When I saw her again, she couldn't believe how good my skin looked. And then she realized it had always looked basically okay, *except* when I had been sick....

I get really puffy around the eyes, and have a lot of spider vein blotches all over.... but it's getting (mostly) better, i guess. If i have a relapse in GI symptoms, anyhow, it shows in the skin.....

I'm having skin stuff that seems like it could be DH (was quasi-diagnosed with Celiac, see Enterolab results below).

I've this stuff on-going since about 12, with a couple of especially bad bouts. When I was younger, it was around the thighs from top to knee, intensely itchy, on both sides.

Now it is not symmetric, it is only on my right thigh. My scalp is also very itchy, and (strangely) the pad of my index finger is so itchy I'm finding myself biting at it like a dog to scratch. heh.

I am also have some immune stuff going on my corneas, and this is all concurrent with a relapse of GI symptoms from when I went gluten-free last November. I haven't had any gluten purposefully, but eat out a lot, and usually don't give them special prep instructions.

I am planning on going on a no-processed-foods diet starting immediately. However, I also need to decide whether to bother going to doc for this skin stuff. I have not been diagnosed *officially* with celiac; I waver about whether this is a blessing or a curse. No pre-existing condition on one hand, no docs who know what to do with me, no ability to say without doubt that I have it, on the other.

If they biopsy and it's positive for DH, I fear they will ask me to go through another endoscopy. The last time the doc didn't go down past the duodenum, and never took biopsies of the small bowel, so it was a nice waste of time and money for me. On the other hand, if that's what it is, I would love some kind of TREATMENT cause I'm miserable.

So. I'm not really comfortable posting a picture here....but I was hoping that someone might be willing to let me email them to you and take a look and at least you can tell me, Yes, that could be DH, or No, that totally doesn't look like DH.