New Here!

[mrsnj91]

Just wanted to introduce myself. I have actually been lurking on here for about a week now. You posts have been very helpful.

In all honest I am not sure yet if this is where we should be but for now I find the information on here helpful!! My DD is almost 1 yr. old (on Wed actually!). She has been having some problems since starting on solids containing grains since August. I would give her crackers and she would have diarrhea and diaper rashes. I would stop and just give her fruits and veggies and it would clear. We went on this cycle for a few months with a few dr. appointments thrown in. I was thinking a wheat allergy and the dr would just brush it off. Finally around the holidays she started with hives so I asked for a referral to an allergist. The RAST test came back neg. except to dust mites. Well that wasnt' helpful but I got the go ahead to feed her whatever till her actual allergist appointment. During this time we continued to battle hives, diarrhea and diaper rashes along with some eczema on her face too. We finally got in to the allergist and did a scratch test. She came back boardline for Barley and nothing else. Well two days later she showed a re-flareup to the wheat and we got a call back telling us to remove her from all wheat till a follow up appointment in a month. So I removed all wheat and Barley from her diet. She doesn't eat rye. But everytime I give her oats we have diarrhea and diaper rash. Now I am thinking this is a bit more than just an allergy. It is possible that she could be getting reactions without a positive allergy test but it seems odd that this is all based around grains EXCEPT rice. She had reflux and was only on a rice based formula with no other cereals or grains till about 6 months because of the formula with the rice. It would bother her. So till she started on table foods containing grains she had done fine. On baby cereals. Only fruits and veggies.

Well this was supposed to not be a gluten free trial diet but as I start elemenating more and more it seems that we are infact on a gluten free diet. She has done rather well so far. No more hives. The eczema is clearing and the diarrhea is no longer. However she can only tolerate rice based food items at this point. As I look for foods and research things I of course come back to Celiac. The allergist actually brought it up in our 1st meeting but mentioned he thought is wasn't due to her gaining weight and growing fine. However in my search I have found that is not always a true guideline.

My oldest is 12 and is currently diagnosed with reflux. My middle DD is 8 and too was diagnosed with reflux this year. Both take antacids as needed. We know these "bad times" are based around fried foods. So we were told no fried foods or eating late at night and put on antiacids. As I research I am begining to wonder if this reflux is in fact not. Maybe it is the breading and not the fried oil. My son is BIG on fried but my daughter is not. It could be after eating a hamburger or chicken fingers or a waffle. My son has been doing better with only a few bouts but my middle DD continues to have an upset tummy after eating. She is not big on a lot of grains and it seems (now that I am looking) that it often is after eating a wheat based item. IF this is what we might be looking at I am not sure where it would have come from. I personally have no problems but my DH does often after eating out. However, I have read you can be a carrier with little to no reactions. So who knows!?

Of course I am scared and worried and upset and angry. I simply don't know at this point where we are headed. Right now I am taking it one step at a time as I can really not do much else. Right now I focus on my youngest. She is due to go back to the allergist in about another week. I think he might send us to a GI (which he mentioned in his last visit if we cannot find an answer). I dont' know what will happen there.

So since we are not "offically" diagnosed, I hope you don't mind me popping in now and then. It is nice to know that I am not alone. Calms me to know that, no matter if an allergy or Celiac, that there are others living on this diet and doing well. And, boy, your posts about what foods to look for and not to use have so helped! Trying to find things that are wheat, rye and oat free for an 11 month old that she will eat or can handle is HARD!!!

I would love any help, advise or guideing!! And sorry for the novel post!

Since I don't have my siggie set up...my name is KIMBERLY!

[key]

YOu need a referral to a Pediatric GI specialist. It won't show up as an allergy. My son's IGg level was the only level elevated, because he was so young. When they are young, celiac doesn't always show up. My son had diarhea, wouldn't eat (or ate really cruddy), spit up some still at 14 months, fussy and slept alot, wasn't walking yet and I feel it was from malnutrition.

Anyway, we ended up taking him off of all gluten containing products. There is wheat hidden in all sorts of things out there. Look on the board here, but anything that says Natural Flavor, modified food starch, malt, etc. are things it can be hidden in. You will want to get her off all these things. My son changed dramatically in just a few days, started sleeping less, less fussy, no diarhea, finally had his first "normal" stools two weeks after starting the diet. He gained weight and the doctors gave us a diagnosis based on his positive response to a gluten free diet.

You are in the right spot here! Welcome. There is a world of information out there. Make sure if you really want a diagnoses you continue to give her gluten, until she has a biopsy, if this is what you choose to do. OUr son was obviously better without it.

GOodluck and hope I didn't repeat something you were already doing. I didn't get to read your whole post! I was in a hurry.

Take care!

MOnica

[jaten]

Welcome, Kimberly! And of course you are in the right place for friendly support regardless of what the ultimate diagnosis turns out to be.

I am a rather newly-diagnosed Celiac myself (12/05) but you'll find others here to be very helpful. Others who have actually walked in your shoes. To my medically-untrained self, it certainly sounds like your youngest may indeed have Celiac. (The others sound like real possibilities as well).

This is naturally a very scary time for you. The waiting and the unknown are beyond expression.

IF your child(ren) has Celiac you will go through lots of adjustment trying to find foods that work (and you'll find lots that don't). But you will find your way much sooner than you ever thought possible. The dreadful symptoms will subside quickly, and the quality of life for the gluten-free Celiac improves dramatically.

Most of us here feel that our Celiac diagnosis is a blessing. Unlike some of the things that our drs. tested for in trying to determine why our bodies were so sick and for some (but not all, malabsorbing), Celiac is a condition we can live with

Oh, and yes, your daughter can be growing and gaining weight at a perfectly normal pace and still be Celiac. The small intestine may not be damaged enough yet to prevent complete absorption of nutrients. For some that comes later; others never reach that state. Celiac is insidious in its symptoms. BUT the good news is a gluten-free diet is the only "medicine" necessary to regain good health.

I know others will be chiming in soon.

Please keep us posted. I'm kinda new here, but already I can tell you there's a tremendously caring support network here. Best wishes to you and your family, Kimberly.

[mrsnj91]

Thanks for the welcome!!

I know that allergy and Celiac are not related. One of the reasons why it is so stressful right now because I don't know if we are dealing with allergies without a positive test, Celiac or both!

I have read some comflicting info on line though and perhaps someone could help.....

There is Celiac, a gluten allergy and allergies to oats/wheat/etc. Correct? Some sites say there is no gluten allergy. Only an allergy to wheat or Celiac. Others say there is a gluten intollerance without being Celiac. Still others say it can be a gluten allergy. And then of course Celiac itself. Seems there is no one thought on this....on line anyway! Can someone answer that for me?? Too confusing if you ask me!!!

[Becky6]

My daughters tests were neg but they said to do a gluten-free diet as a trial. Once we did that she stopped having bad runny bms 10x a day. Dairy is also a problem for her. My tests were also negative but all of my awful symptoms have gone away being gluten-free. So for us a dx is not necessary, we are just happy to be feeling good finally! Good luck!

[Nic]

Hi, my son was diagnosed last May. His primary symptom was severe and chronic constipation. The doctor only looked for Celiac because my father has it too. I, so far, do not. Anyway, my son has been in the 95th percentile for height and weight his whole life. At his worst, last year, he lost weight but it still didn't put him under the 90th percentile. He certainly was never a concern for being under weight or having lack of growth. Since he has gone gluten free, he gained 6 pounds. He is now 51lbs. The symtoms don't necessarily always follow the text books.

Nicole

[jaten]

Thanks for the welcome!!

I know that allergy and Celiac are not related. One of the reasons why it is so stressful right now because I don't know if we are dealing with allergies without a positive test, Celiac or both!

I have read some comflicting info on line though and perhaps someone could help.....

There is Celiac, a gluten allergy and allergies to oats/wheat/etc. Correct? Some sites say there is no gluten allergy. Only an allergy to wheat or Celiac. Others say there is a gluten intollerance without being Celiac. Still others say it can be a gluten allergy. And then of course Celiac itself. Seems there is no one thought on this....on line anyway! Can someone answer that for me?? Too confusing if you ask me!!!

Ok, here is my understanding of possible wheat/gluten "conditions."

-Wheat allergy - Testing, etc. is similar to other allergy testing. I don't know what physically happens to the body with this one, but it is not actual damage to small intestine as with Celiac. I haven't heard of a "gluten allergy" but I think a person could certainly be allergic to multiple grains.

-Gluten Sensitivity (Gluten Intolerance) - Not an allergy. Not celiac. But people sensitive to gluten (protein in wheat, barley, rye, oats(?) )do experience symptoms despite no evidence of an allergy or Celiac. These people also respond very favorably to a gluten-free diet.

-Gluten sensitive enteropathy (aka Celiac, Sprue, Non-tropical Sprue etc.) - Diagnosed by bloodwork to look for specific markers, then by small intestine biopsy. I understand that there are over 200 possible symptoms of Celiac. Bottom line, regardless of severity of symptoms a strict gluten-free diet must be observed. Ingesting even small amts of gluten causes actual physical damage to the lining of the small intestine. (Mucosal lining/villi). Can lead to further serious medical problems if the diet is not adhered to.

Not knowing where you live, try to find a pediatric gi who is versed in Celiac (and wheat allergy, but this one should be a little easier to find).

We're a friendly and supportive group, but we're not medically trained. We share the information we find. We'll be here to listen as you cry in frustration. We'll be here to rejoice with your successes.

You may have already done so, but try Mayo Clinic's website and Nat'l Inst. of Health website and search for the terms Celiac, Wheat allergy, etc.

There's also the Celiac Sprue Association and the Celiac Disease Foundation for more info and of course lots of others. Naturally you want to read a lot. Just be sure you're getting medically sound information.

Lots of msg boards out there, too. To be honest I've tried several of them, but just keep coming back here where the information that has been shared hasn't led me astray yet!

I'm being rather vocal for a newbie myself. I just feel your pain. While my angst was for myself rather than for a child. The fear of the unknown is still fresh in my mind. At least you have begun to solve the problem....wheat and???? BUT I think someone mentioned earlier, in order for the tests for Celiac to be valid, a person must be ingesting gluten. A double-edged sword because how do you feed your child something that you know is making them sick. Hopefully you can find a good GI very quickly. Just be aware of the conundrum, and then you have to decide.