Possible Celiac Infant - Need Advice

[drewsmommy10232007]

Hi. I am brand new to this forum, but not new to Celiac. My mom, uncle, and numerous cousins of theirs are Celiacs. My 10 month old son has been dealing with a severe diaper rash (from chronic diarrhea), requiring numerous trips to the pedi, and two prescriptions for his bum. He was tested for Celiac, and his results were normal. My issue is this...both my mom and uncles blood work comes back normal as well, but their biopsy comes back positive as Celiac. The pedi doesn't want to do an unnecessary biopsy, so has suggested that I go gluten free (his rash and diarrhea cleared up after five days of no gluten) and one a week, give him wheat, record the outcome, and at the one year check with enough consistency, we'll do the biopsy. As of now, at most, they're labeling him wheat sensitive. They took stool samples for bacteria and parasites as well, and I'm still waiting not so patiently for the results.

Yesterday, I gave him a few crackers, and today he had a poop that left him screaming, and his rash came back. This afternoon his eczema, which is typically only a few dime sized patches on his belly, is more pronounced on his belly, he has bug bite looking welts (about a dozen each) under both armpits, and bug bite/rash on his legs, and the back of the neck. What signs should I be documenting for the journal of gluten reactions? Are rashes common with wheat sensitivity or Celiac?

Have you had better luck with certain products for the rahses/eczema breakouts? I am a fairly green minded mother. We cloth diaper, I made his baby food from organic produce, he uses Lame Advertisement and Weleda baby products. I prefer to not put too many chemicals on him, so would prefer more natural options. I also have pure Shea Butter, and many essential oils.

I would love and appreciate any help or advice you can give me! I grew up fairly gluten free, so I am prepared to live my life that way, to make my sons life as great as it can be. I just need a little help getting there!

Thank you in advance!

Vanessa

[home-based-mom]

If you were involved in a clinical trial, you would be instructed to record absolutely everything that was different after you used whatever was being tested than it was before you used what was being tested, even if you couldn't imagine how there could possibly be a connection.

Using that as a guideline, record everything you mentioned in your post as well as any other differences. After doing this weekly for a year it will be easy enough to tell what was caused by gluten and what just coincidentally "happened."

From what you posted my guess is it won't take any where near a year to figure this out.

[aorona]

I would give him cream of wheat cereal, which is pure wheat, this way you or the doctor doesn't have any concerns about the other ingredients in the wheat cracker being fed to him after going gluten free. As stated above, I would keep a food journal, with times you fed him. Also write down the reactions, being very descriptive and possible taking photos ( of the rashes, of course) along with the time. Hopefully this helps and your baby gets some relief. 2 months is plenty long enough to know whether or not he can have wheat.

[Pattymom]

If his reactions to wheat are so clear, I"m not sure what the once a week suffering is for, expecially since it takes a few days at least to recover from it. with my dd, I had taken gluten and dairy out as an infant b/c she reacted, without conlusitng a MD. (I regret this now, because records would have been helpful, but alas) I figured at the time it was food allergy and she would outgrow it, and I wanted a rash free happy baby, I figured out how to do this at home, so I went with it. We kept her off until she turned 2, then gave it to her retested.negative blood work. So in hindsight, wish we had mroe documentation, on the hother hand, she was really saved a lotof suffereing because was rash free with no abdomincl symptoms once lost the gluten (she was nursing,so I had to stop eating it, incidently I never felt better and never went back, did have a positive blood test even after 2 months gluten free)''

I would document the wheat reaction now, and go back to the MD after a month, or less as soon as you are sure, not once a week of slow torture for a year. If you need more evidence than just your own observation, maybe lots of wheat and a biopsy.

I don't regret taking her off the foos that hurt her,i think in the long run it helped her health, it's just confusing now that she's older, and we are trying to get a real diagnosis and figure out what other things are going on.

It' hard to watch a baby suffer.

Patty

[Fiddle-Faddle]

I would give him cream of wheat cereal, which is pure wheat, this way you or the doctor doesn't have any concerns about the other ingredients in the wheat cracker being fed to him after going gluten free. As stated above, I would keep a food journal, with times you fed him. Also write down the reactions, being very descriptive and possible taking photos ( of the rashes, of course) along with the time. Hopefully this helps and your baby gets some relief. 2 months is plenty long enough to know whether or not he can have wheat.

I strongly disagree.

I think you already have your answer. If the few crackers brought back his rash AND left him screaming in pain from a poop, then pure cream of wheat will make him even sicker. A reaction this severe in a child this young is not something to play with. STOP NOW, before you do him irreparable harm.

If this were a peanut allergy, and he had already had obvious reactions, there is no way anyone would be advising you to feed him more peanuts until he has an even worse, possibly fatal reaction, or until he goes into anaphylactic shock.

A friend of mine has a 5-year-old son, whose reactions to gluten seem to be confined to severe eczema. She took him off gluten, it miraculously cleared up, but then the doctor wanted to put him back on gluten for tests to confirm. She put him back on gluten, and the kid had such a severe reaction, it took months of being gluten-free to clear, instead of a few days as it had before, and they are now trying to figure out if that severe reaction caused him to react to all kinds of things he'd never reacted to before, like dairy, soy, corn, and nuts.

There is no test as accurate as dietary reaction.

Invasive tests, such as an endoscopy/biopsy, involve sedation--which is the riskiest part of any surgery. There ARE a very small number of patients who die on the table from the anesthesia, not from the procedure. There is also the risk of hospital-acquired infection. And the results are not accurate in small children.

What will you do if the biopsy is negative? Feed him gluten?

What kind of reaction should it take for a doctor to take a mom's observations seriously?

If he is fine off gluten, for heaven's sake, don't feed him gluten. It won't hurt him, there are no nutrients in wheat that he can't get from anything else, you don't need a doctor's permission to keep gluten out of his diet, and it sounds like it is TOXIC for him.

When he is older--hopefully much, much older--, you can let him try gluten (after telling him how terribly sick it made him as a baby),if you are still not convinced. But hopefully by then, there will be much more sophisticated, less invasive, and more accurate ways to test.

In the meantime, you risk doing him significant harm, just to satisfy the doctor's curiosity and pad his bank account--when it sure sounds like you already have the answer.

[drewsmommy10232007]

My big problem, is that my ex-husband wants a diagnosis from the doctor. He thinks I do things like cloth diaper, and make his baby food from organic produce, and use more expensive/natrual products on him to be a pain. He doesn't think that different brands really make a huge difference in his eczema. I am totally fine having him gluten free, but since the blood work came back normal, he's convinced that Drew doesn't have a sensitivity to wheat. My fear, is that without a concrete diagnosis from the pedi...which I know can be hard to get, he won't believe that this sensitivity is there. My ex lives on boxed, processed foods - and although I have full costody, and he has visitation two, three hour, and one, six hour block each week, he can still be feeding him crap filled with gluten. Since he doesn't have Drew the next day, he doesn't see the result. I'm almost looking forward to the day Drew turns one, and he'll have every other weekend with his dad. Maybe then he'll see the reactions I do...but I don't want to cause him more harm than necessary. The doc said that the two months until his one year check, with gluten once per week, and a documentation of the reaction will be concrete enough for a "sensitivity" diagnosis. I personally don't want to put him on gluten for the sake of a biopsy test. Seeing the reaction is enough for me to keep gluten as far away as possible. I'm fine doing a few weeks of "testing", if that's what it takes to appease the doctor, and get a written sensitivity diagnosis for my ex. If the reaction continues Wednesday, when I give him wheat again, I am going to call the doctor, and see if he'll write a diagnosis up. My ex won't be able to argue about it as much.

[April in KC]

I understand. Sometimes you seek the formal diagnosis for other people who will be caring for your child. You have to be an "evangelist" in this way.

Do you think your ex would be somewhat swayed by a genetic test that shows that your son has the genes that predispose to Celiac Disease? Your doc could order if (if he/she knows the name of a lab that does the test - seems like some on the boards mention Prometheus and/or Enterolab). Or, if you can spare the $100, you can order the test yourself online from Enterolab, and they will send you the cheek swab through the mail, which you mail back.

A positive on the gene test means that you have either HLA-DQ2 or HLA-DQ8. Having the genes is not a guarantee that you have Celiac Disease, but it is a necesary prerequisite.

By the way, it is NOT common for little kids to have the blood antibodies until they are older (some say over 3 years, some say over 5 years). It takes their immune systems longer to develop the full antibody response. There are scientific articles that talk about this. But the genes would be there from birth.

Both I and my husband have Celiac Disease, a coincidence we only discovered as we were testing our oldest son, who was quite sick with Celiac Disease at age 7. We decided to test the whole family (us and our three kids) by blood work, since they recommend all first-degree relatives of anyone with Celiac Disease get tested. Our youngest two sons were ages 3 years and 9 months, and they did NOT have positive blood work. However, both of them were symptomatic.

We decided to do the gene test on our 3-year-old, because his symptoms, while present, were not as severe as the rest of the family. We wanted more confidence before putting him on the restrictive diet. The gene tests confirmed that he had a copy of HLA-DQ2. This helped us feel more confident that his symptoms were due to Celiac Disease. We pulled him off gluten, and he had a great dietary response....diarrhea stopped, etc.

So, 1.) It's not uncommon for young kids to not have the blood antibodies , and 2.) The gene test might be a good option for someone in your position (especially with a family history).

Also - when you're dealing with people who don't quite understand what you're doing with your child's diet, it can be very helpful if you pack a lot of their meals for them. It's extra work, but it makes it EASY to do the right thing for your child.

Good luck!

[April in KC]

Oh - wanted to add that my youngest son (also a Drew) was 9 months old and had a ton of eczema at the time I was diagnosed. Sometimes it would weep and bleed. His skin rashes DID clear up on the gluten free diet. It didn't happen overnight. A week was long enough to see a difference. At a month, it was mostly healed but had a slight redness to the areas he used to break out. A couple of months in, his skin was great. He did have one little patch of eczema in another place that did not clear up until I also removed corn from his diet....but gluten was the big culprit.

When he was still rashy, I used a few things that were helpful. Mupirocin (brand name Bactroban) is helpful for preventing staph infections. TheraSeal is good for putting a protective barrier between broken skin and potential irritants like other people's clothing (too scented, wool, Cigarette smoke, etc.). The Mupirocin has to be prescribed. The Theraseal is something you can buy at a large drugstore.

Avoid Aveeno and other oat products, since they are not gluten free.

If you're looking for natural treatments, I had some luck with breaking open Evening Primrose Oil (EPO is a source of GLA) gel-caps and applying a small amount topically. Wet wrapping also works great for eczema. The EPO seemed to take the edge off the rash overnight, but it did not make it go away. The wet wrapping will work wonders on eczema in about a day if you are faithful with it.

None of these treatments will stop your child from breaking out again, which is why you try to find the trigger (i.e. gluten). When you find the trigger, that's when you realize that the rashes are definitely coming from within, not from anything external.