Totally Confused

[marythemom]

My little boy will be 5 next month. At 10 days of age, he was hospitalized with RSV. At 7 months he had had so many ear infections that he had his first set of ear tubes. His body rejected the tubes in only 4 months. At 13 months he had his second set of tubes and his adenoids removed (he'd had over 20 ear infections before he was a year old!). Four months later they'd fallen out again (probably pushed out by yet another ear infection). He'd also been hospitalized with wheezing attacks and had to have 2 consecutive nebulizer treatments in the hospital.

At two, he was eligible for his 3rd set of tubes, but through a string of circumstances we'd started him on an elimination diet (removing ALL possible food allergens). I went to an allergist since this seemed a bit extreme for a two year old. The allergist took one look at his problem sheet and said, "It's wheat or milk." It wasn't milk. The ear infections stopped. The frequent bowel movements (NOT diarrhea, just 3-5 times a day) that we had assumed were because he was breastfed up to that point, stopped. A couple of months later, he started wheezing again, and we took him off barley. The asthma stopped. Through all of this he NEVER complained about anything hurting so we couldn't use self reporting to tell if things gave him a tummy ache or had an ear infection, etc.

After 18 months of a strict gluten-free diet they said he was old enough to let us do the scratch allergy test. We put him on wheat for a week. It came back negative. They ruled out celiac because it's usually genetic. Daddy realized that his stomach problems improved when he went on a gluten-free diet. Daddy had a colonoscopy. He's not celiac. He has GERD (acid-reflux disease). They said my son might grow out of it at age 5-6 years. We decided to let him try glutens again last week. He complained of a stomach ache. He got a fever, but it went away before we could take him to a doctor. Stomach flu is going around, and he's been "fine" for a week now.

So if you got this far, here's my dilemma. His 5 yr. well check (with a new doctor who believes in food allegies, and has at least heard of celiac disease). is in 2 weeks. The nurse suggested leaving him on glutens for that length of time, and making an appointment with a Gastro-interologist (since it can take months to get in) so he can take the test after having been on glutens for 2 months. Do I need to put him back on Barley too? Every time he has vinegar or things flavored with vinegar he gets sick (can vinegar have barley? I know it can have wheat). He doesn't seem to be suffering on the wheat, but I've been afraid to introduce the barley. I just can't figure out if these are classic allergy symptoms or atypical celiac symptoms. I just don't know where to go from here, but I'd like a diagnosis before he starts public school! He's been on a gluten free diet for 3 years so he isn't craving a "regular" diet. He doesn't even know what that tastes like. At this age, he's totally compliant, and children don't start teasing other children about differences until they're in 2nd grade. Still, he's growing up fast. I would love any support or suggestions. I have friends who's children are gluten-free or Gluten-free Casein-free, but none of them are for celiac or allergy related reasons.

Would really love some advice!

Mary (mother of 2, one gluten-free boy (almost 5), and one non-gluten-free girl (7.5 yr.)

[seeking-wholeness]

marythemom,

Welcome to the board!

They ruled out celiac because it's usually genetic.

Yes, celiac disease is genetic, but your doctor CAN'T rule it out based only on the lack of "classic" symptoms in family members! Too many cases are atypical, or even symptomless, for this approach to be reliable. There IS a gene test available (even in mainstream medicine, I believe) that would give you a definite answer about whether your son carries the gene that predisposes a person to develop celiac disease, and in my opinion it makes sense to start the testing process with that. It is also entirely possible to have BOTH a classic wheat allergy and celiac disease, as they are mediated by different elements of the immune system.

I don't think it is necessary to add barley back into your son's diet when testing for celiac disease. As far as the autoimmune reaction is concerned, gluten is gluten, whether it be from wheat, barley, or rye. You would, however, need to be sure that he is eating enough gluten to produce a strong enough reaction to show up on the tests. I'm not sure how much gluten that would be, though; maybe someone who has already traveled this road can help you there.

Good luck to you and your son. I wish you a speedy and accurate diagnosis!

[gf4life]

Daddy realized that his stomach problems improved when he went on a gluten-free diet. Daddy had a colonoscopy. He's not celiac. He has GERD (acid-reflux disease).

Did your husband also have an Endoscopic Exam? (Tube down the throat to the stomach and intestines) Just wondering. Also both your husband and sons tests could have been altered by the fact that they have been gluten free for so long. I would have the entire family gene tested. Given the history and marked improvement on the gluten-free diet, any one of you who has the genetic markers for Celiac Disease should stay on the diet. I see no reason for anyone to go back on gluten until after the gene testing. But if they want to do conventional testing, like blood tests and intestinal biopsy, then you would need to put them back on a "normal" gluten containing diet. For how long depends on the person. Most doctors agree on the equivatlent of 3 peices of bread a day for 4-6 weeks. I found this was not enough to show damage on the biopsy for me. After many years of being gluten free it could very well take up to a year or more back on gluten to show enough damage on the biopsy. It is not worth it in my opinion. Why loose a year (or more) of health. This is what an excellent book on Celiac Disease says:

taken from Dangerous Grains by James Braly, M.D., and Ron Hoggan, M.A. from the section called Gluten Challenge on pg. 65-66:

The major pitfall of such a gluten challenge is that it is often undertaken by those who have been following a gluten-free diet as the result of their own research or on the advice of a health-care practicioner or friend.  Whether motivated by the difficulty of the gluten-free diet, concerns for family members, issues related to insurance coverage, income tax consciderations, or other factors, such individuals later want laboratory or biopsy confirmation from a doctor for the diagnosis of celiac disease.  But, if the patient has already begun a gluten-free diet and the intestinal wall has thus been given a chance to heal, it can take as much as five years or more after returning to eating gluten before the intestinal damage characteristic of celiac disease will show up on a biopsy

I recently completed a gluten challenge for myself, and I can tell you that I have severely damaged myself and made my recovery time much longer due to the amount of gluten I had to consume to feel I was going to get accurate results, and I'm not even sure I will show positive results. I will find out next week. But I had only been gluten free for two weeks. Your family has been gluten-free for years.

I hope this helps you make an informed decision. If the doctor is really informed about the disease, it may not be necessary for any of you to go on gluten. I would wait until after your visit to see what the doctor says. (Since I see that the date of your posting was more than two weeks ago, if you have seen the doctor I would be interested to know what happened.)

God bless,

Mariann

[wclemens]

Oh Mary, how I feel for you! I am a 59 year old, allergic to all gluten, milk, dairy, egg whites, and yeast. I started having asthma at age 8 and a myriad of symptoms following that, for years and years, until finally going on a strict diet that eliminated all the foods to which I was allergic.

Now my 9 month old grandson has the same allergies, and I am reliving the turmoil with him. Fortunately, we are able to keep him free of all these foods, and though he is having ear infections he is basically healthy.

I must admit I don't know the answers to your questions, but I would just like you to know that I will be thinking of you and your family, and picturing you learning just what the exact problems are, and how to deal with them.

Getting on a diet that eliminates foods which are poison for us is something that most doctors seem incapable at this point of understanding. Asking them to learn about Celiac, with all they have to think about, seems difficult. I get so heated when the Kaiser doctors pooh-pooh my grandson's allergies, saying that Celiac isn't genetic, and he might outgrow his allergies to milk, that GRRRRRR!!!!! I have to just close my mouth and bite the bullet so to speak.

I am so glad that you are here on the board. Guess what? We will probably end up learning from YOU as you go through this whole process. I look forward to seeing your future post to see what is occurring. God bless! Welda

[marythemom]

I have to admit I'm still totally confused. Sometimes I think I just picked Celiac disease because it was there. Allergies run in my family, and my son does not have any of the classic symptoms ( then again, there's asymptomatic... ).

Only my son has been on the diet. My husband tried it for a couple of weeks, and found improvement, but discovered that he was also eating less, and eating out less which contributed more to the lessening of his acid reflux disease. He's back to eating a regular diet, and only has problems when he eats too much. The doctors were adamant that he did not have celiac disease. Myself and my 7 year old daughter seem to be doing fine on a regular diet (she craves carbohydrates even more than I do, but doesn't seem to be having any adverse reactions).

My son has been on a "normal" diet for about a month now. The first week he complained of tummy aches (which surprised me because he NEVER complained about anything before, even raging ear infections). We decided that since the tummy aches stopped it had probably been due to his radical change in diet (I'd have a tummy ache too if I was trying donuts and pizza for the first time). About 2 weeks into this he got diarrhea and a fever for 24 hours, but stomach flu was going around. Now he seems totally fine and has been off the diet for a month. He seems to naturally avoid bread products although he eats them, but he's always been that way. At 18 mos he ate an entire package of hotdogs and an entire cantelope in one sitting. He's always preferred fruit and protein - we called him monkey boy. Now he eats more balance meals, but still loves fruit. On Tuesday, he goes to see his new pediatician for his 5 year well check. I've been told to go ahead and make an appointement to see a gastro-interologist, but haven't had a chance yet.

Several family members have shown signs of wheat allergies as children and have apparently outgrown them. I just don't know enough about the differences between celiac disease and food allergies/intolerances to say if he's classic or asymptomatic or what. Most of the testing seems so severe, but maybe the genetic test is not?

I want to thank all of you who have responded! I checked back once and didn't see more than the one reply, so thank you to the person who sent me an e-mail letting me know that more of you had responded. I will definitely keep everyone posted, and if anyone has any ideas where I should go next I would like to hear them. Thanks again!

Mary

[Guest aramgard]

Welda, I know what you mean about Kaiser doctors. About one and a half years ago my middle daughter had an Addison's crisis and was hospitalized. A Kaiser doctor took her off her steroids and nearly killed her. Because she has Addison's disease her adrenal glands shut down, she takes steroids and other medications to replace what the adrenal glands normally do, kind of like taking insulin if you are diabetic. When my husband and I were visiting her she had a yellow, darkish color and was acting strangely so I asked to see her chart and then she and I realized what had happened. She immediately called her endocrinologist and requested a consult and he threw a fit. This is why my husband and I quit Kaiser 25 years ago. I never even saw my family physician because she was overbooked constantly. Sounds like you are doing great. Keep it up. Shirley

[seeking-wholeness]

Mary,

Have you read Kids with Celiac Disease? It mentions that there is a sort of "honeymoon period" that can begin as early as age six or so and last until the end of adolescence, and during this time the symptoms of celiac disease may appear to vanish. They tend to return, however, during the young adult years--but in a DIFFERENT FORM that may not seem to be related to the original symptoms at all! My bet is that this phenomenon explains why doctors used to think that children could "outgrow" celiac disease.

I have also heard that individuals tend to crave foods that are damaging to their bodies. It sounds strange, but I am gluten intolerant and (I suspect) also casein-sensitive, and guess what my favorite childhood food was? Macaroni and cheese! So there may be something fishy going on with your daughter's (and your own) carbohydrate cravings. Also, don't forget that undiagnosed celiac disease predisposes a person to develop secondary allergies, so if allergies run in your family, celiac disease may be part of the reason why!

I'm all in favor of starting the investigation with gene testing, but as I just got back on health insurance a little over a week ago, I haven't been doing my research on exactly how to go about it. Maybe someone who has successfully ordered gene testing through a regular doctor can let us both know what to ask for!

I wish you and your family the best of luck as you unravel this mystery!

[gf4life]

Sarah,

I got a referral to a pediatric GI for my kids and he ordered the gene test through Prometheus labs. They have a special form that you can use to get the blood sent to their labs and they do the tests right. Your doctor can request those forms if they do not normally use them. I feel really blessed, the day we were in the office, the doctor was going to check that they had three forms for Promethius, and he walks out and the Promethius labs representative was there in the office, so he was able to get three forms for my kids. I hope you are able to get them done, now that you have insurance.

God bless,

Mariann

[wclemens]

Shirley, Thank you! Yes, things are going well, and I hope that they are going great for you and your family too. Hope your daughter and her family are situated and "feeling at home" in their temporary quarters after the fires. How are you doing Shirley? Welda

[Guest aramgard]

Welda, Unfortunantly, I came down withthat terrible flu about a month ago, ran a temp of 104.5, nausea, diarrhea, etc. Two days later my husband came down with it and then 2 days later my daughter. It's been 3 weeks since I had that and was feeling pretty good, when I came down with another ear infection, right ear this time. Last night it broke and my sinuses cleared. Maybe it will go away without antibiotics. I'm really sick of being sick. I guess 50 years with undiagnosed Celiac have taken it's toll on my immune system. My daughter is settled in their RV on their property. They have some issues with the county about drainage of the creek behind them that must be settled before they can rebuild. I hope--you and your family are hanging in there. My asthma has been much better lately, just those darn bacterial infections. Isn't it too bad we can't get decent prescription coverage. I've been ordering most of my regular meds from Canada. But with antibiotics you need them now and Secure Horizon's only covers generic. We need better representation in Congress to assure us a healthy life. So, here I am ranting again. Hang in there and stay well. Shirley