Possible Rash From Gluten? (Pic Heavy)

[SPJandE]

I will definitely ask her about giving him about Benadryl doseage if we need it. It always comes raging back, so I expect this time to be no different.

I did check our laundry detergent and it is gluten free (Ecos F&C). I still need to check on the dish detergent (hypoallergenic, dye free Dawn for bottles & Cascade for Dishwasher stuff). We use unscented Dove (the bar) to wash him with and his lotion is off brand (Wal-Mart) unscented Eucerin. I still need to check on most of that, though we haven't actually washed or lotioned him in since going off gluten. We've just been letting him soak and play in coolish water and then getting him out.

He's been on Neocate formula (and Nutramigen before that). We have always been super careful about keeping him completely dairy free so that shouldn't be an issue thankfully. His formula does have iodine in it, but I don't know if there are any that don't?? Hopefully we won't have to go that far with it though...hopefully. I have been reading a lot on here and I think the iodine and salicylates and what not are freaking me out, lol. I mean that in a completely overwhelmed kind of way.

Perhaps this is why he's always had trouble gaining weight as well. It would answer a lot of questions. I mean overall, he is doing great...crawling, pulling up, doing everything he should and then some. He has, however, always had trouble with weight gain. He started out really well and then from about 2 weeks on, started thinning out. He is 14 lbs. now at 7.5 months. His height and head have stayed on the charts, so no issues there at least, but he is definitely a long, super skinny boy!

Hopefully we will see an improvement in him soon and we'll just go from there! Thank you again for all your help!

[Ninja]

Yeah, he doesn't have any of that...just the itchy bumps everywhere. And no, I don't think this particular person knows about celiac and dh, but I don't know for certain. The cat thing was one of the first things we thought of, but I just couldn't see his rash clearing up for a week (with the steroid) and then coming back. If it were the cat, I would think the steroid would do nothing to help it.

Well, steroids are immuno-suppressants and allergic reactions are mediated by the immune system so in theory the steroid could "help". Actually, I have a friend who is allergic to formaldehyde and has taken prednisone to help control her rashes. She says it helps, but it doesn't always make the rash go away... and the side effects are bad for her.

[SPJandE]

Well who the heck knows then! We can't test at this point without continuing to feed him gluten for the next month and even then it's iffy as to whether or not the test would be accurate. So I think we are doing the best we can possibly do for him. We'll just see how the gluten free trial goes, see what his doctor thinks, and go from there.

[squirmingitch]

I know. It's more than frustrating isn't it? Catch 22. Caught between a rock & a hard place.

Come on here & vent when you need to; it's perfectly understandable & we all have to sometimes.

Big hugs!

[pricklypear1971]

Well who the heck knows then! We can't test at this point without continuing to feed him gluten for the next month and even then it's iffy as to whether or not the test would be accurate. So I think we are doing the best we can possibly do for him. We'll just see how the gluten free trial goes, see what his doctor thinks, and go from there.

I agree.

Ironically, the best "clue" or convincing thing you can do (other than documenting a positive response to gluten-free) is to get the rest of your family tested for Celiac. If one or more of you come up positive it will be a huge red flag for his doctors.

And, as he gets older and starts solids he'll need gluten-free food, and if you start going gluten-free at home everyone will be gluten-light, and you have a higher chance of false negatives on their testing.

I advise testing the whole house ASAP. The sooner you know, the better.

I wish they wouldn't have given him the steroids....poor guy could have gotten a biopsy.

I do hope gluten is the answer for him (since you haven't found another trigger). I'm sure the rash is painful.

[pricklypear1971]

Oh, another thing-if it is DH keep it moisturized. It is very important to "baby" the skin so it will heal. I apply Vanicream several times a day to healing scabs.

I even put a band-aid on a spot in my finger because it touches so many things and is easily irritated.

[ciamarie]

Wow, lots of new messages while I was at work today... I wanted to throw out one idea, that it may be because he's so young that the rash will go away pretty quickly once he's off gluten, so that's what you're seeing. Especially since the steroids were part of the picture. It should hopefully mean (if he stays strictly gluten-free and all that...) that any relapses, as it were, will not be very severe.

[Ninja]

Well who the heck knows then! We can't test at this point without continuing to feed him gluten for the next month and even then it's iffy as to whether or not the test would be accurate. So I think we are doing the best we can possibly do for him. We'll just see how the gluten free trial goes, see what his doctor thinks, and go from there.

Aww, I know it's hard. Those little ones just don't understand why they feel the way they do. If it helps, it doesn't really look like an allergic type rash to me. Plus, I really think the DH experts here are experts!

[pricklypear1971]

I don't know if I'm reading the labels correctly, but are some of the neocate formulas lower in iodine than others? It would be worth comparing - since it may be necessary to try lowering iodine.

If any are low-ish and within his age/needs range it may be worth a whirl. I'd try gluten-free for a while first then try li (if possible) if you think you're on the right track.

It talks about allergy free, so I assume it's gluten free. I'm on my phone - hard to read big pages.

[SPJandE]

I looked this morning on their website and from what I seen, he's on one of the lower ones. He's on Neocate Infant (which is the only one appropriate for him). The Neocate Nutra has the same amount of iodine (well, very close) but it's meant for spoon feeding. I seen that the Junior has a bit more in it. Hopefully just going gluten free will make an improvement in him. And yes, Neocate IS gluten free so no worries there!

A small update, his rash is starting to come back. It's going in it's same pattern, as expected. It starts with a few spots here and there, they go away, a few new ones come. If it goes as usual, he'll be covered again in a few days. We'll just keep him moisturized and wait it out. Hopefully without gluten in his diet, it will go away quicker and stay away. We shall see.

[squirmingitch]

Keeping our fingers crossed that it goes away quickly for him. Keep us posted please.

[SPJandE]

A quick question! I got an e-mail back from his doctor. She agrees that we should definitely test my older son (he's 7). The testing she mentioned, she said has to be pre-approved by insurance (which won't be a problem). She said the testing kit has to be sent to them and the blood is drawn in their office. She said it is "a multi step test that is done that looks not only at markers but also at his genetic risk of having Celiac that is the gold standard at this point for blood testing". She said if that testing is positive, he would then go to the GI for a scope and biopsy (which she said is the "true gold standard").

She said she definitely thinks we should test the baby at some point too but she is okay with waiting if I keep him gluten free and feel comfortable that he's doing better. She said she thinks we could test him now and we would get the most out of it if he is challenged with gluten before the blood draw, but that was up to me and to just let her know where I was at with it.

Do I start gluten again and test the baby too...knowing the steroid may interfere with the results? If it's the test that shows genetic risk and what-not, is that better? Should I just keep him gluten free and wait? Help!

[squirmingitch]

The genetic markers won't show if either of them are celiac. It isn't a conclusive test in terms of a concrete dx.

Prickly & others know much more about the specifics of which blood tests exactly should be done so I will let them answer that. I'm sure they will be on soon.

There may be a problem with the 7 mo. old for 2 reasons other than the steroid & they are: if he has dh (I'm sure he does) then he's less likely to test positive on the blood work --- that's the way it is with dh. And children as young as him don't usually test positive anyway.

I'll let others explain.

But that's why we were saying the 7 mo. old needs a biopsy of the dh.

[SPJandE]

I got the response from his doctor and all that went out the window! I always expect her to think I'm totally crazy and I am always surprised (pleasantly) when she doesn't. It took close to 7 years, but we finally found an awesome pediatrician...even if we have to drive 1.5 hrs. to get to her.

Okay, so DP and I talked about it and decided to stick with the plan to just test the 7 year old right now. We'll keep the baby gluten free, keep a close eye on the rash (as if we have a choice) and see what brother's testing shows.

Thanks again for all the help! I will definitely let you know how everything goes.

[pricklypear1971]

A quick question! I got an e-mail back from his doctor. She agrees that we should definitely test my older son (he's 7). The testing she mentioned, she said has to be pre-approved by insurance (which won't be a problem). She said the testing kit has to be sent to them and the blood is drawn in their office. She said it is "a multi step test that is done that looks not only at markers but also at his genetic risk of having Celiac that is the gold standard at this point for blood testing". She said if that testing is positive, he would then go to the GI for a scope and biopsy (which she said is the "true gold standard").

She said she definitely thinks we should test the baby at some point too but she is okay with waiting if I keep him gluten free and feel comfortable that he's doing better. She said she thinks we could test him now and we would get the most out of it if he is challenged with gluten before the blood draw, but that was up to me and to just let her know where I was at with it.

Do I start gluten again and test the baby too...knowing the steroid may interfere with the results? If it's the test that shows genetic risk and what-not, is that better? Should I just keep him gluten free and wait? Help!

1) What name brand is the testing kit? Find out and post it here, along with the specific name of the kit. Let's make sure you are getting all of the necessary, age appropriate tests.

2) It sounds like it includes a genetic test. That's good IF it includes the alpha/beta subunits. Why? Because the Celiac markers may show up on the units they don't report; thus, giving you a false negative. Having Celiac genes does NOT mean you will develop Celiac, it means you are at risk for it. It's a good indicator; however, there are a small percentage of people who do not have the typical genes found in the US but DO have Celiac. Sometimes, doctors use this as an "elimination" test to say that in spite of other positive tests, or a positive scope, or positive results going gluten-free you do NOT have Celiac. So, just be sure you know what the test means - don't take your doctor's word for it. Do not let it be used to EXCLUDE Celiac if you are negative for the two most common genes.

3) Yes, get your 7 year old tested.

4) Get YOURSELF tested. You are at high risk because of your mother's dx. Read the fact sheets from the University of Chicago Celiac Center. Arm yourself and fight for a dx (if there's one to be found). Open Original Shared Link

5) Your doctor is a little backwards if she's hard-lining for the endoscopic biopsy as a definitive dx. There are other medically accepted ways to dx Celiac now. Open Original Shared Link and click on the internal document link and read page 138.

6) The longer your baby goes gluten-free the more antibodies disappear (if he has them). He must be consuming gluten to be accurately tested. The steroids are extremely problematic and can negate serological testing. False negatives in children are high, even on glutenous diets. If you read the links above you'll notice they talk about "in children under 2"... because children under 2 test negatively at a higher rate than other children. It would be harder to get an accurate dx for him, even without the steroids (if gluten is his issue).

7) The bottom line is that there is no good testing answer for your 7 month old. His best bet, at this stage would be a DH biopsy with a knowledgeable dermatologist (one who has positively dx'ed someone by biopsy before). DH patients typically have less gi damage, and the (most?) blood tests are made to pick up antibodies that are involved with gi damage. However, there are two contradictions to a biopsy: the steroid use and the gluten-free diet. The DH biopsy depends on finding IgA in the sample and skin IgA drops on a gluten-free diet. You already saw physical proof (the rash disappearing) that the pred worked to suppress the ai response. It makes sense that it could affect the biopsy.

8) There is this new dx called Non Celiac Gluten Intolerance. This may be your best bet if 1) your 7 month old responds to the gluten-free diet and you don't want to put him back on gluten for testing 2) you want a doctor's dx (which will be very handy for school and military). Open Original Shared Link At some point you may want to try for a Celiac dx, and you could. Currently, there is no test for NCGI. This is an excellent opinion paper that explains the differences between NCGI, celiac disease, and Wheat Allergy. Open Original Shared Link

So, in the end it's great that your doctor wants to pursue testing. But YOU need to be tested, also. There's no better time to do it because if gluten is at the heart of the issue you will start decreasing your household gluten intake for one or more children. And gluten-light does NOT test well.

[squirmingitch]

Most excellently put Prickly! Perfect.

[Di2011]

Gosh - sounds like you are lucky to have a doc who is reasonably informed and flexible. You are very lucky!

[SPJandE]

I don't want to jinx it BUT this is day 10 gluten free (day 9 steroid free) and his rash has not come back. Normally, it starts to come back at day 4 (steroid free) and by day 7 it is everywhere and awful. He started to get a few bumps at day 4. They went in the usual pattern (come and go in random spots) for a couple days and now his skin is clear again. This is the longest his skin has EVER been clear. He is still a bit itchy at times, but looking great for now!

Oh and after only a few days gluten free, he started pooping normal too. He was having a really hard time going and only every few days. TMI, but when he went, it was basically a hard ball. He goes at least once a day now and has no trouble doing so.

So far, the gluten free trial is going very well for him!

[squirmingitch]

That's wonderful news! Now, I'm just going to remind you that dh has a mind of it's own & it just might come back from time to time until all the crap gets out of his skin; BUT I think considering the youth of your son that he will have an easy road of it & perhaps you've seen the last of the gluten rash.

Fingers crossed!

I want you to be seeing a smile on his face all the time.