Blood Test Says "Not Celiac" ...Did Come Back Positive For Egg, Milk, And Soy--Now What?

[daniknik]

Hey folks!

This is my first post on the boards, but I've been lurking for months. I'm looking for support as I try to identify all of the foods that are causing me problems. I'm definitely struggling with this and I'm having a hard time identifying what's actually causing the problems since I have so many food intolerances.

Symptoms/History:

Birth-2: severe milk/egg allergy. Stopped breathing. Severe intestinal distress. Recurrent diarrhea. Had tonsils/adenoids removed at age two. Put on an elimination diet

2-6: Parents reintroduced foods one by one. They don't remember/didn't keep track of the details. But since I stopped having sever breathing and gut issues they assumed I was fine. Told me that I'd "grown out" of my food allergies and it was okay to eat everything again. Had pnemonia 4 times between kindergarten and 1st grade.

Middle School: Diagnosed with asthma, allergic rhinitis (dust, mold). Frequently ill. Began having recurring diarrhea. Told to eliminate lactose. Began drinking lactose free milk & taking lactaid pills. Reduced symptoms, did not resolve the issue.

High School: Continued gut issues--heartburn, gas, diarrhea. Told that I had a "nervous disposition" and that I needed to try and be calmer.

College: Developed migraine headaches. Heartburn becomes so severe I lost my voice (I was a voice major in college this was TERRIBLE). Began taking daily prescription acid reducers. Asthma lessens. Continued gut issues. Still gassy with diarrhea despite taking lactaid pills. Taking daily nasal spray and allergy pills for the post-nasal drip, itchy eyes, and cough. Diagnosed with depression.

Post-College (past 7 years): Continued symptoms: Body pains, Throat-clearing, post-nasal drip, easy bruising, poor sleep, night sweats, diarrhea, bloating, gas, daily heartburn. Diagnosed with IBS and GERD. Tested for early menopause because of the night sweats. Also tested for Gluten antibodies. Tests come back negative. Told to sleep with a fan.

Past year: 29 years old. Experiencing serious vocal problems for over a year (I now teach chorus full time and I was worried that I'd have to quit/lose my job if I couldn't sing). The heartburn is not resolving itself despite taking Prilosec twice per day non-stop. Visit an ENT who scopes me and tells me I have vocal swellings. Tells me to take "vocal naps" and cut out caffeine, chocolate, and tomatoes.

Non-stop heartburn. Continuous gut problems: gas/diarrhea. I feel like the "stinky teacher." Very embarrassing. Continuous runny nose, dark circles under eyes. Night sweats many times per week even with a fan. Period becomes very frequent changing from a consistent 29 days to 21-23 days. No explanation for the change in frequency. Body ached/pains. Headaches. Fatigue. Lack of energy. Depression.

Attend a women's music festival summer '09. Get a massage and have the masseuse notice my bruises. Asked if I bruise easily...I say yes. Masseuse suggests that I eliminate gluten from my diet. Freak out. My grandfather was a diagnosed Celiac and I couldn't imagine not eating gluten...

Spend two months agonizing over the idea of cutting out gluten. Begin an elimination diet on the recommendation of a friend who does acupuncture and chinese medicine (unfortunately this friend lives several states away so it's hard to work with her.)

Break down and go into my physicians office. Have ELISA blood tests done (17 days after I began the elimination diet). Results take a month to come in and only cover the most common allergic inducing foods. Neg IgE and IgA results. Positive IgG results for Eggs, Milk, and Soy but NOT gluten AGAIN! Shocked to have a negative gluten test. Surprised at the Egg and Soy results. Doctor tells me that based on my blood tests I do not have Celiac. During this time my sleep improves. The night sweats mostly gone. The runny nose clears. The heartburn lessens (still present). The gas and diarrhea lessens.

Try to reintroduce gluten by eating barley soup. 8 hours later start to feel terrible. Gassy, bloated. The next morning I have horrible diarrhea. Bad sleep. Nausea. Fatigue. Body pains. My body is messed up for several days. Stop eating barley/gluten. Takes about a week for my body to chill out and feel mostly better.

Try to reintroduce bell peppers. Have bad burps and gassy feeling. Try to reintroduce potatoes, don't feel as if I have an immediate response. Hard to say. Reintroduce some tomato products. Heartburn returns.

Reintroduced corn 1st time. Ate popcorn with nutritional yeast on it (I didn't realize it contained gluten) very gassy and bloated. Reintroduced corn second time. Seemed to be okay.

I guess I'm wondering if it'd be worth it to try and do the Entero lab stool testing to see if I carry the Celiac gene or not. Also wondering if I should try to reintroduce other gluten-containing foods since barley really isn't one that I eat very often at all. My doctor doesn't seem too worried about all of this. She just said to continue my food journal. According to her "if it makes you sick don't eat it." She and proceeded to tell me that she is non-celiac gluten intolerant herself.

How long can it take for people to identify all of their food intolerances? I was off to a good start and now I'm not so sure that everything I'm eating is good for me. These past couple of weeks since the barley challenge haven't gone so well. If I am gluten-intolerant how long can it take to get over the affects? If you have positive IgG results can you ever re-introduce those foods? It seems like soy is in virtually everything...just like gluten! Also, do you call it an allergy or an intolerance?

Thanks for reading such a long post! Any experience, strength, or hope out there would be greatly appreciated!

[mushroom]

Welcome to the board, and to the world of non-celiac gluten intolerance, which sounds to be the planet you are living on, along with your doctor. I am intolerant to soy also, as well as corn and nightshades. I was intolerant to lactose, but since my villi have healed I am no longer lactose intolerant . By the way, I was also bruising all over my hands and forearms, without even realizing I had bumped myself.

Yeah, soy is just as hard to find and get rid of as gluten; in fact it is worse because they put soy in so many gluten-free foods as a "healthy" option, and it is hard to find things labelled "Soy Free", although Earth Balance does do a soy free spread. They also use soy flour a lot in gluten free mixes because it supposedly gives a better crust to baked goods.

I did not do any ELISA testing, it was all trial and error, mostly error until I got to the root of all my intolerances, 18 months of error. I would definitely not go dabbling around with gluten of any sort if I were you. Gluten is gluten, whatever it is in, and is obviously harmful to you. And you do want to keep your voice. Every bit of gluten can be harmful to you, and the damage seems to be cumulative. My psoriasis and rheumatoid arthritis were pretty much unfazed by the gluten free diet because I was (self)diagnosed so late, and I have to take biweekly injections of Humira to control them. Do not risk doing any more damage to yourself with other autoimmune diseases. Just accept the fact that you are intolerant of these things and can't have them, and move on, is my best advice. It could well take you two weeks to recover from the barley challenge damage. I would give it longer before I got alarmed.

Whether or not you do the Enterolab testing is entirely up to you. If you do carry a celiac gene or a gluten sensitive gene it could be important if you have children to know that they are at risk. It will also measure gliadin antibodies and confirm or not your other intolerances. Apart from that, it probably is not going to affect your diet at all, or at least from the sound of your symptoms it shouldn't

So that is my best advice.

[ravenwoodglass]

False negatives on testing for celiac are all too common, even among folks who have had symptoms for a very long time.

I know I am one of them. The doctors kept testing with the Elisa test over and over and over. Along with everything else that can be imagined. As the doctor who diagnosed me said if I waited for a positive blood test I would have been dead first.

Go ahead and start a good strict trial of the gluten-free diet. You in a good place to learn about it and it really involves much more than reading labels. Doing Enterolab testing wouldn't hurt. I hope you get some answers and relief soon.

[Fiddle-Faddle]

You do sound like a classic celiac, though certainly many things can cause similar symptoms.

I agree with Ravenwoodglass--I think your best bet is to do a trial of The Diet.

It's not anywhere NEAR as bad as it sounds--really! I know I cried for two days when I found out--but then I found that there are gluten-free recipes for EVERYTHING I thought I'd never be able to eat again, and that everything tasted just as good as the gluteny originals. NOTE--the premade stuff in the stores does NOT taste so good==you do have to go with homemade.

However--when STARTING this gluten-free diet, you will want to avoid ALL breads, even gluten-free ones, just for a few weeks or months. The reason is that those gluten-free breads are very difficult for a gluten-damaged tummy to handle, and you will end up with major tummy-aches, feeling like you've swallowed a brick, if you eat them at first.

"But what CAN I eat??" I hear you cry.

Start with plain grilled meat, chicken, fish, steamed rice (white or brown, but brown has more fiber, which you do need), fresh fruits, fresh veggies, potatoes,corn, quinoa. Think Asian! If you are not intolerant to soy, you can use LaChoy soy sauce or San-J wheat-free Tamari (they make several kinds--it MUST say "Wheat-free" on the bottle). Regular soy sauce(like Kikkoman) has wheat listed as the second ingredient.

It is entirely possible that ALL your other food intolerances will disappear within a few months of going 100% gluten-free. It is also possible that they won't. Only time will tell.

I do have a 16-year-old student with celiac who found that she is fine with all raw milk products, but that pasteurized milk products affect her the same way as gluten. So, if you have trouble again with dairy after trying them again down the line, you might want to look into the raw milk option. But not now!! Now you have to let your intestines heal--and dairy products will not let them heal, even though gluten is the primary problem that caused the damage.

Now, the classic MD approach for your situation would be blood work (the celiac panel, not the Elisa test--the celiac panel looks for antibodies to gluten and gluten-induced autoantibodies) followed by an endoscopy/biopsy.

But since you are already gluten-free, those tests would probably be negative--you have to consume MONTHS of gluten (large amounts) in order to produce enough antibodies to be seen, and to cause enough intestinal damage to be seen on the biopsy. Stopping gluten for even a week can screw that up.

In the meantime, it is also very important to realize what kind of nutritional problems you might have as a result of celiac/gluten intolerance. Vitamin deficiencies are EXTREMELY common for us, and if you are taking acid blockers for the reflux, then you are at double risk for B12 deficiency--You need acid to properly absorb B12. Take away acid, add intestinal absorption problems, and you almost certainly have B12 deficiency as well as all kinds of other deficiencies. That's why untreated celiacs usually have osteoporosis and anemia.

Children's chewable vitamins are said to be more easily absorbed than adult tablets, and the best source of B12 seems to be sublingual methylcobalamin (available without prescription), which absorbs under the tongue rather than in the intestines.

Good luck, welcome aboard, and please keep us posted!

If a Gluten-free Casein-free diet does not address all your issues, you would then probably want to do further investigations, possibly including an endoscopy/biopsy.

[Wolicki]

Many of your symptoms sound exactly the same as mine. It have been gluten free for 7 months. It's taken me 6 months to figure out the intolerances. Who knows, maybe since we have had similar symptoms, we have the same trigger foods, although I think I am ok with soy, even though I gave it up too. Here's my list: all grains, including corn, dairy, nightshade vegetables, broccoli, cauliflower, popcorn , nuts and artificial sweeeteners.

I was having so many reactions that this is what I did: I ate nothing but chicken soup for 4 days- chicken, carrots, onions, celery and turnip with some spices. That way, I didn't have to agonized over what foods I could have for each meal. Trust me, for someone who used to be a true foodie, it was not as hard as I thought. I felt fantastic for those few days, and that is worth any sense of deprivation.

so, start with just a few foods that you know are ok. Don't eat anything out of a box. STay away from any of the 8 major allergens for at least 6 months. Add foods one at a time. I just made a different kind of soup! Good luck, it does get better, but it is hard, but so worth it!

[happygirl]

Based on what you posted, it doesn't appear that your doctor ran the correct tests for Celiac.

Did he run either the tTG IgA or EMA IgA test?

[daniknik]

Thanks for the responses folks! I have been on a completly gluten-free diet (except for the Barley trial and the brewer's yeast on the popcorn) and found that it helped a lot. The problem is that, being the cook in the household, I've been under a bit of pressure to expand my food options faster than perhaps I should have. This damn elimination diet takes a long time! Plus, I don't seem to have managed to completely eliminate cross-contamination at home (my partner has no food intolerances and is still eating gluten, soy, milk, and eggs among other foods that I am avoiding) so this has made it difficult to keep myself healthy.

I guess I'll need to go back to a more limited diet and start this over again because these past few days have been rough. I had severe heartburn all weekend and then night sweats for the past three nights. Today though, despite the poor sleep, I've had ZERO gut issues and that is a HUGE relief! yesterday I ate: rice milk, carrot soup, rice cakes, apple sauce, and apple pie Lara bar (Vegan, gluten-free, SF), rice pasta, asparagus, garlic, olive oil, lemon juice & zest, shrimp, and H20. If I can manage to get the night sweats to go away I'll be golden.

Still wondering if I should try wheat this weekend to see if it affects me the same way as barley. My partner thinks I should give it a shot since the blood test said negative for celiac. What do you all think? I'm really on the fence about this. I felt so terrible when eating the barley that I'm scared it'll totally ruin my health for the next week or so.

Thanks again for all of your advice!

[daniknik]

Based on what you posted, it doesn't appear that your doctor ran the correct tests for Celiac.

Did he run either the tTG IgA or EMA IgA test?

I have test results that say:

ANA 1:80 titer negative

Barley/beef/chicken/chocolate/corn/lettuce/malt/oat/orange/peanut/pork/potato/rye/

tomato/wheat/baker's yeast/

IgG: <3.1 neg

egg white IgG: 18.28=high class II

cows milk IgG: 13.76=high class II

soybean IgG: 3.86=high class I

IgE food panel for egg/milk/oak/peanut/soy/wheat/tomato/orange: negative

Endomyseal IgA Antibodies <10 reference range <10

TTG IGA 7 reference range <20

TTG IGG 2 reference range <20

I did have these tests done, but I hadn't been eating any gluten for 17 days upto that point and was feeling A LOT better. Could that have skewed it?

[RollingAlong]

There are limitations to all the tests. Confirming food intolerance with a challenge is standard.(I am talking about intolerances, not allergies that require epi-pens.)

That said, after your reaction to barley, I wouldn't bother testing wheat or rye.

I wouldn't spend the money on the celiac gene test either.

The elimination/challenge process does take a long time. Especially if you have to heal up from positives. Also, the first 6 months of gluten-free or whatever free eating can give some weird reactions no matter what you do. In other words, I think you may have started your challenges too soon.

I would focus on the CC issues first and then try the challenges around the 6 month mark. Unless your diet is clean, your results are suspect anyway.

A very simple diet now will hopefully help you feel better and then you will have more energy for the challenges. I guess what I am trying to say is that you don't do well with nightshades now, but after the heartburn has gone away for awhile, you could test again.

I have read that it is very unlikely that the milk and egg intolerances will ever go away. Same with gluten. I don't know anything about soy. The reading I have done suggests that you can re-try other foods at some point. The time line really seems to vary. For my spouse, I did not set a challenge until he had been symptom free for 6 weeks (yes, it taking us awhile!!)

This is all a royal PITA, but in your case, it could save your career - hang in there!!