My Sister, Negative Blood Test but Testing a Gluten-Free Diet Anyway

It turns out that my sister, who swore she would never try a gluten-free diet, is giving it a try. I don't know what all of her symptoms are, I just know she has not been feeling well and the doctors tell her she is just fine. She had a blood test for Celiac, some allergy, and her thyroid and all came up perfectly normal. They just assume that means there is nothing wrong but with the way she feels I'm sure she would tell you otherwise. I was looking up information on Celiac.com and found that a lot of people who are gluten-intolerant but don't have Celiac end up with negative blood tests. And my son also had a negative test result and he is extremely sensitive to it. So she has decided to try the gluten-free diet to see if it makes a difference. I hope she doesn't have it, but at the same time it would be a relief for her to find out what's wrong and be able to find a solution to it.

UPDATE: My sister has been feeling much better on a GF diet. She did a trial for a few weeks and then ate gluten again--not a good result. Of course, real results are complicated by the fact that she is in the first trimester of pregnancy so morning sickness doesn't really help. But she was convinced enough to avoid all her favorite foods. People just don't go on a GF diet because it's fun, you know? If you really do feel better it is worth it!

Seizures?

I don't want to sound paranoid, I'm not that concerned about it at this point, but I wanted to write it down.

Last Saturday at a social gathering Barrett exercised such great self-control for the most part. I was very proud of him. He was hovering over the cookies and cheese crackers with such longing, but he would just look up at me and say, "Those will make you sick." However, you can only expect so much self-control for a two year old. After about 30 minutes he snuck under the table and was eating the crumbs of some smashed cheese crackers.

We saw the usual contamination symptoms: stomach ache, diarrhea, diaper rash (his poor swollen legs!), runny nose/cough, bloating, meltdowns, etc. But I also noticed times when he would just stare off into space an appear not to be aware of anything for several seconds. Then he would just go on as if nothing had interrupted what he was doing. Just yesterday he had been crying because he got a sliver in his foot. My husband was holding him and then he just stopped for several seconds and was staring into space. I was snapping my fingers right in front of his eyes and he wouldn't blink or anything.

I don't want to jump to the conclusion that these are seizures, but the certainly could be. It's something that I am going to watch closely and keep in mind though. I'm not sure if there is a link between that and celiac or not. If anyone knows anything about it though, please comment! (It only seems to happen if he is contaminated).

An Overview of Our Story

If you would have told me when I got married that I would have a child with severe food intolerances I would have laughed. Nobody in my family, extended family, or anscestry had any known food problems except for one cousin who was allergic to pretty much everything. It was the same with my husband's family.

Barrett was my first child and so I did not know what was normal and what was not. He was born a month early and had diaper rash from the day he was born until three months later. Four doctors and several treatments later did not help in the least. I finally discovered that a concotion of A&D for burns and Mylanta solved the problem. It was a fix for the symptoms but I never discovered the cause.

Many months later when Barrett was walking he got a very severe diaper rash. He had rashes on and off for no apparent reason but never this bad. It was so bad we had to put toys on a chair for him to play with because he couldn't sit down. If he dropped one it hurt too bad for him to pick it back up so we had to be right there with him all the time. We had to rinse him off in the sink when he needed a diaper change because it hurt so bad to have us touch him with the wipes. We were at a loss and my special diaper concoction (we refer to as Stuff) had ceased to work months ago. We also noticed that when he had a bowel movement it looked almost like a pile of sand.

We did what any computer-programmer's family would do and did an internet search on sandy bowel movements and diaper rash. The search took us straight to a thread on Celiac.com. I was a little bit surprised because I was looking up diaper rash, not food intolerance. It had never occurred to me to make the connection. But I read about people with similiar experiences whose children were all diagnosed with Celiac. My husband's sister had been diagnosed with Celiac six months earlier so I did a search on symptoms and sure enough, Barrett had almost every one. I just hadn't recognized them.

I had no idea that it was not normal for a child to have 4 large bowel movements every day. I didn't know that sleep problems were related to digestion. He got sick easily, and I myself have an autoimmune disease although it is not food related. Everything seemed to come together. I realized that just before the bad diaper rash showed up we had eaten whole wheat pizza for dinner. Looking back further I realized the ever since my husband's sister had been diagnosed with Celiac I had tried to keep an eye on Barrett after eating wheat products, but I could never be sure if it was affecting him because I didn't write anything down and I brushed off what I did notice as me being paranoid.

We took immediate action and started my son on a gluten-free diet while we looked up diagnosis and treatment methods. We called his pediatrician and requested a blood test. The blood test came up negative but we had read that it was not a very reliable test, especially for kids under age five. We read the same about a biopsy. So we brushed off the test results and kept him gluten-free.

It took some time, but after several weeks he started to have fewer and smaller bowel movements, and they started to look less sandy. The diaper rash faded sooner than that and the burns on his bottom healed. That was enough evidence for me.

However, he still had problems every so often and although we had tried to eliminate all hidden gluten if we were missing something. We read that others with gluten intolerance could not tolerate casein either, so we decided to try to eliminate milk from his diet. Bingo. We solved it! Or so we thought.

He made even more improvement but after awhile we still felt like we were missing something. We had not had much success with local doctors. No one seemed to know much about what was going on, or even think that anything was going on at all. The pediatrician said if I was really worried I should just make an appointment with a gastroenterologist and have a biopsy done. I was completely against doing a biopsy because I would have to put Barrett back on a gluten-containing diet just to get a positive result. It seemed ridiculous to do something I knew would cause my son a lot of pain and discomfort just to prove that it was doing him damage. That much was obvious. I wanted to know what was causing the damage and a biopsy could not tell me that. We even tried a chiropractor and some homeopathic medicine that did absolutely nothing. We also had Barrett tested for cystic fibrosis (which thankfully he doesn't have).

Then we discovered Enterolab. We had read about it on Celiac.com and decided to fork out the money for it. (They do not deal with insurance companies). We sent for the tests and sent them back in. A few weeks later we knew that my son was sensitive to gluten and casein and carried no Celiac genes but two gluten-intolerance genes. It was so nice to know for sure that he had those sensitivities and that it wasn't some other obscure problem.

However, Barrett had still been having trouble and Enterolab does not have a test for corn sensitivity yet. We had found a connection between some cornbread muffins I had made, some taco soup a neighbor brought us (but cleared all ingredients with me first), and some Earth Balance margarine with natural flavoring derived from corn. I was sure it was corn that was causing the problem but my husband wasn't convinced. We tried feeding him some corn chips. He at about five of them and he had horrible diapers for two weeks and I was convinced.

But we had sent in for some more tests through Enterolab and the results showed that he is also extremely sensitive to soy (we had been feeding him soy milk for months) and mildly sensitive to eggs and yeast. No wonder we had been missing something! We looked back to the foods that had bothered him--the corn bread had the margarine which is soy based, the taco soup had hydroginated soybean, and even the corn chips were cooked with soybean oil. So we are still trying to figure out if corn really is a problem or not.

That is all to the story--for now.

E.T.A. Since writing this I have had an opportunity to experiment on Barrett with corn. He made such improvements after removing soy from his diet we decided to try corn again. Straight corn so there would be no confusion with any other ingredients. That was three days ago and so far--no reaction! It is such a relief! I let him have a corn tostada today, we'll see how that goes.