Where Do I Start?

[mskelly]

I'm so confused right now I don't even know where to start. I guess I'll start with a brief history:

My DS is 22 months old. We first started noticing problems with food allergies as soon as I introduced food. Looking back he was probably having issues before that also. Anyway, any time I gave him a new food he would get a rash. I'm talking about everything from rice cereal to fruits and veggies. He had allergy testing (RAST) when he was 6 months old. It only showed peanuts. When he was about 1YO we took him to a GI for reflux issues. He spitting up, having trouble sleeping, etc. The GI kind of brushed me off. Anyway, the reflux seemed to get better and we were happy. He also suffers from oral aversion so he has always been difficult to feed. In March, we had round 2 of allergy testing. This time we found eggs and milk. The milk was a low score. We put him on a dairy free, egg free, peanut free, and soy free diet. The soy was negative on the test, but he had very observable reactions to soy milk and Pediasure which is soy based. He improved a bunch, but he still wasn't right so I took him back to the allergist. This time they did a Celiac panel in addition to more foods. The person who gave me the results was not helpful at all so I need to call back for more details. He wouldn't send me a copy of the report, but I'm going to go to the office next week and pick it up. He told me that the celiac panel was +.

He told me to put him on a gluten free diet (in addition to all of the other dietary limitations!) and if things didn't get better, take him to the GI. I asked my ped. about the results and he said not to make any changes until we saw the GI mostly because his diet is already so limited. I called the GI today and he's going to review the bloodwork on Monday and then let me know what we should do. No wonder my heas is spinning.

I guess that wasn't a brief history. I should also add he's quite small (he's been sliding down the growth chart - started at 75% and is now at 10%) and we've been having trouble with the mushy/diarhea poopy diapers.

I wrote down some phrases the nurse said when I called her to explain the results again. She said something about Glidian test. She also mentioned IgA and IgG. Are those two separate tests? I only have one number which was 30.5 and she said 0-24.9 was normal. I believe she also said EmA was within normal limits. Does any of this mean anything to anyone?

I would just really appreciate any advice on where to start with all of this. I'm a bit overwhelmed right now.

[rinne]

I am new to all of this also and cannot help but I wanted to say welcome. I have found this forum to be a wonderful resource and I am sure that you will too.

[Ursa Major]

Hi Kelly, and welcome to this board. While I don't have a child with celiac disease (at least not one who is obvious), I have it myself. I've read enough here about children with celiac disease, to have an idea of what your son's problem is. If the IgG and IgA tests were positive for celiac disease, he definitely has it, and should be on the gluten-free diet immediately.

His symptoms are typical of celiac disease, especially the failure to grow and the loose stools. I understand that he is on a restricted diet already, but it is absolutely imperative for him to be on the gluten-free diet, because otherwise things will only get worse, until he might become deathly ill. Plus, as you said, he isn't growing.

I am sure others with little children with celiac disease will chime in, who will know more about toddlers and celiac disease.

[rinne]

Bump.

[shayesmom]

I'm so confused right now I don't even know where to start. I guess I'll start with a brief history:

My DS is 22 months old. We first started noticing problems with food allergies as soon as I introduced food. Looking back he was probably having issues before that also. Anyway, any time I gave him a new food he would get a rash. I'm talking about everything from rice cereal to fruits and veggies. He had allergy testing (RAST) when he was 6 months old. It only showed peanuts. When he was about 1YO we took him to a GI for reflux issues. He spitting up, having trouble sleeping, etc. The GI kind of brushed me off. Anyway, the reflux seemed to get better and we were happy. He also suffers from oral aversion so he has always been difficult to feed. In March, we had round 2 of allergy testing. This time we found eggs and milk. The milk was a low score. We put him on a dairy free, egg free, peanut free, and soy free diet. The soy was negative on the test, but he had very observable reactions to soy milk and Pediasure which is soy based. He improved a bunch, but he still wasn't right so I took him back to the allergist. This time they did a Celiac panel in addition to more foods. The person who gave me the results was not helpful at all so I need to call back for more details. He wouldn't send me a copy of the report, but I'm going to go to the office next week and pick it up. He told me that the celiac panel was +.

He told me to put him on a gluten free diet (in addition to all of the other dietary limitations!) and if things didn't get better, take him to the GI. I asked my ped. about the results and he said not to make any changes until we saw the GI mostly because his diet is already so limited. I called the GI today and he's going to review the bloodwork on Monday and then let me know what we should do. No wonder my heas is spinning.

I guess that wasn't a brief history. I should also add he's quite small (he's been sliding down the growth chart - started at 75% and is now at 10%) and we've been having trouble with the mushy/diarhea poopy diapers.

I wrote down some phrases the nurse said when I called her to explain the results again. She said something about Glidian test. She also mentioned IgA and IgG. Are those two separate tests? I only have one number which was 30.5 and she said 0-24.9 was normal. I believe she also said EmA was within normal limits. Does any of this mean anything to anyone?

I would just really appreciate any advice on where to start with all of this. I'm a bit overwhelmed right now.

My dd tested negative on her Celiac panel and she had all of the symptoms you have described. I voluntarily put her on the gluten-free diet (as well as eliminated dairy, soy, eggs, food colorings, artificial sweeteners). Dd is THRIVING on this diet.

If your ds' panel came back positive, then he should be on the gluten-free diet. The pedi is not doing you any favors by contradicting what the allergist and Celiac panel are telling you. A GI specialist would run the same Celiac panel and then order a biopsy. The biopsy may or may not confirm the Celiac panel (depending on the odds of the GI being able to obtain enough samples of the small intestine to confirm the presence of Celiac disease....there are 22 feet of small intestine while the endoscopy can only obtain samples from the first 5 feet). If the biopsy comes back negative, your ds could potentially suffer problems for years to come by remaining on gluten, only to be re-biopsied later and have Celiac confirmed.

Ultimately, the choice is yours to make. Everyone here can understand your concern about the "limitations" of the gluten-free diet. It is difficult to undertake in the beginning. However, you do get used to it and eventually, it becomes second nature. We've been gluten-free in our home for well over a year and I can honestly say that it's not that hard to maintain once you get in the swing of it. I know that with all of the other food issues, this seems an insurmountable task. It will be okay. The shock of the initial news will wear off and the best thing that you can do to help deal with the psychological/emotional aspects of this is to stop focusing on what your ds cannot have and begin focusing on all of the things he can have. This takes a bit of time and re-training but once you begin doing this, the rest all falls into place.

Good luck to both of you as you go through this process. If you do feel it necessary to see a GI, then do so ASAP before you begin the diet. This is a very personal decision and you should follow your own instincts. Just keep in mind that testing in children under 5 can be extremely unreliable (as they produce a lot of false negatives). It is nearly impossible to get a false positive.

[mskelly]

Thanks for the input.

When you said the testing is unreliable in children under 5, do you mean the biopsy or the bloodwork? Also, since a false + in nearly impossible do you think the one that was within normal limits could really be a +? Would retesting likely yield different results?

I'm not afraid of going gluten free. Fortunately, since we've been through so much with the allergies I have already trained my self to think about what he can have. It does make it a lot easier to think that way. Since he barely eats anything we will be seeing an occ. therapist for oral aversion. I'm going to make sure whatever foods she is working on are gluten free.

I've been reading about gluten in hidden places. Are fruits and veggies safe? That's what we are going to start working with.

I think the ped. also wanted me to wait until we saw the GI in case he does want the biopsy. I'd hate to be gluten free and then have to give it to him just so he can have the test. From my initial contact with the GI it sounds like he wanted to do the diet and see how it goes. I'll have to ask about the need for a biopsy. The GI asked for a copy of the bloodwork so I don't "think" he'll order the same test again.

[Guest nini]

in my humble opinion the biopsy is not the "gold standard" the Dr.s claim it to be, it misses too many cases too often.

in children the testing is unreliable if negative because they are too little to show too much damage even if having obvious reactions. however if blood tests are positive, he absolutely has Celiac. Celiac is not an allergy though, it is an autoimmune disorder. While some allergies can be outgrown, Celiac cannot be.

My daughter's testing was negative, but her response to the diet was miraculous and she absolutely has a reaction to gluten if she is accidentally exposed, so I have no doubts that is her problem.

You may find that some of his other allergies go away after being gluten-free for a while, some may not, but since you are already able to focus on what he CAN have v/s what he can't, you've got a head start.

Stick with foods that are naturally free from the allergens, fresh organic whole foods are always the best way to go, and it's a lot easier than you think.

I wouldn't bother with the GI, most of them are still stuck in the dark ages as far as diagnosing Celiac. for some reason they seem to think that they are doing patients a favor by not inflicting this diet on them. It is so backwards!

[shayesmom]

Thanks for the input.

When you said the testing is unreliable in children under 5, do you mean the biopsy or the bloodwork? Also, since a false + in nearly impossible do you think the one that was within normal limits could really be a +? Would retesting likely yield different results?

I'm not afraid of going gluten free. Fortunately, since we've been through so much with the allergies I have already trained my self to think about what he can have. It does make it a lot easier to think that way. Since he barely eats anything we will be seeing an occ. therapist for oral aversion. I'm going to make sure whatever foods she is working on are gluten free.

I've been reading about gluten in hidden places. Are fruits and veggies safe? That's what we are going to start working with.

I think the ped. also wanted me to wait until we saw the GI in case he does want the biopsy. I'd hate to be gluten free and then have to give it to him just so he can have the test. From my initial contact with the GI it sounds like he wanted to do the diet and see how it goes. I'll have to ask about the need for a biopsy. The GI asked for a copy of the bloodwork so I don't "think" he'll order the same test again.

When I say that the tests are unreliable in children under 5, I mean that BOTH the biopsy and the bloodwork are unreliable. There is a huge amount of specificity involved in order to diagnose Celiac via these methods. Hence, it can take YEARS for an individual to accumulate enough damage to show up on either the blood tests or the biopsy. The fact that your ds is showing a + on the blood panel suggests that there is enough small bowel damage for cells to be showing up in his bloodstream. Therefore, it is almost impossible that there is a false negative. As far as both tests are concerned, results can only rule celiac "in". They can never rule it "out". That is why the diet is the best indicator of the problem. Going gluten-free will often yield positive response within a few days. Meanwhile, the average time elapsing for a positive diagnosis via blood/biopsy is around 9-11 YEARS. By the time a diagnosis is made, serious damage to bones and other organs is just about guaranteed.

As far as "needing" a biopsy....that is YOUR choice. Personally, if I had a positive on the blood panels, I would skip the biopsy as all it is doing is re-confirming a diagnosis. As I said, my dd's blood panels came back normal. A biopsy was suggested and I refused, opting instead to do the diet. We noticed a huge difference within dd in the space of 24 hours. In 3 days, her behavior and GI issues were unrecognizable as compared to before the diet. And as mentioned by another poster, many other food "allergies" do go away once the gluten-free diet is implemented. The exceptions to that rule are usually dairy (casein), soy and food colorings. These foods/ingredients can create the same damage gluten does and therefore it is best to stay off of them, permanently.

I will also say that before going gluten-free, my dd ate like a bird and was well below the 0% on the weight charts. Her appetite increased threefold within the first week of being on diet. Looking back now, I know that her poor eating habits stemmed from the fact that she was experiencing pain from eating gluten foods. She associated eating with pain (and this at the tender age of 15 months). Once she learned to trust that her foods wouldn't hurt her, she began eating like a champ. She was back on the weight charts within 3 months of starting the diet. It did take a long time for her to accept gluten-free breads and cereals, but I think that's because she was smart enough to realize that these foods (when containing gluten) were her worst offenders. It took about a year to get over those aversions but she is now eating a very wide variety of foods with little complaint. She only questions foods that are given to her by others. At the age of 3, she is now reminding other adults that they need to make sure her foods are gluten and dairy-free. lol!! I am extremely proud that she is taking charge of her own welfare and that the diet is obviously a thing she recognizes as being necessary and good for her.

I think that you may be surprised at how your ds responds. And some day, you may also want to try the diet for yourself as this does have a genetic component to it. I never thought I was "sick" before I started the diet back in January. I have since learned that I have extreme issues with gluten, casein and soy. Being off of these foods has given me a quality of life I had never even imagined.

HTH!

[mskelly]

Thank you so much for taking the time to "talk" to me. It is very helpful.

I will definitely do the gluten free with him. Mostly because I'm too lazy to prepare separate food. It's very encouraging to know you saw results so quickly.

It probably sounds crazy, but I am really excited to start the diet. I'm keeping my fingers crossed that this is the answer to our problems.

[shayesmom]

Thank you so much for taking the time to "talk" to me. It is very helpful.

I will definitely do the gluten free with him. Mostly because I'm too lazy to prepare separate food. It's very encouraging to know you saw results so quickly.

It probably sounds crazy, but I am really excited to start the diet. I'm keeping my fingers crossed that this is the answer to our problems.

It's a pleasure to be able to offer any information to someone new to the diet. When I started down this path with my dd, I was completely alone. I would have given a right arm to have known about this site and have been able to talk with individuals who were in the same boat. Now, I get to "pay it forward". lol!! It's a nice change!

As for the comment on being "too lazy to prepare separate food".....LOL!!! That was my attitude as well! Now, I am too "lazy" to read ingredients and so I do most of my cooking from scratch. It's been surprising to find that meals can still be made on short notice and not take too terribly much effort. It's all about finding the right substitutes and products that fit your tastes. That may take a few months to complete, but after that, it's pretty smooth sailing.

And if you want to know about how healthy this diet is....I know several people who have had serious medical issues that were non-Celiac in nature and all have improved with the gluten-free diet. In a couple of cases, a terminal illness was overcome. So this diet is not as "restrictive" as most doctors would have you believe. In the case of 9 other people that I know, this diet has given them back their lives (that doesn't include my dd and myself ) It truly can be an amazing thing and I am sure that it will be a huge turning point for your ds' recovery!

If you need any kind of help, the people on this board are AWESOME!

[jayhawkmom]

Hi mskelly. Fancy meeting you here. =)

The people here are so much more knowledgable than I am. I so frustrated, confused, and upset about this whole thing. In fact, each and every day I'm more convinced that I too am dealing with celiac, especially after talking with a physicians assistant this morning. She herself is a Celiac, and she convinced me that I MUST be tested.

Anyhow, I agree that with a positive blood test, a gluten-free diet is an absolute must - with or without biopsy.

With regards to the blood tests, I know we've discussed this a little bit, but I don't know if you saw where I mentioned her numbers. On her tests, the specific lab we went through, "normal" IgA was under 10 - hers was 9. Normal IgG was under 11. Her's was 72. Her EmM was within normal limits, though they would not give me a number. Ttg was supposed to be under 5 - hers was 3.

This warrented further testing, biopsy. While her biopsy came back as "celiac free" - we were put on a strict gluten-free diet. Naturally, as soon as we started the diet, she started having problems with milk/dairy. We've since pulled that from her diet as well. She's doing much btter.

And, tonite...two nights in a row, she's had a SOLID bm!!!!! Solid!! So exciting!

[mskelly]

That's weird. Do different labs have different scales? I was told 0-24.9 is normal for the IgA (or was it IgG?) and his was a 31. Why would yours be 0-10?

I wish I had a copy of the report right now.

[Fiddle-Faddle]

That's weird. Do different labs have different scales? I was told 0-24.9 is normal for the IgA (or was it IgG?) and his was a 31. Why would yours be 0-10?

I wish I had a copy of the report right now.

They must have different scales--the lab that tested me set normal IgG at 0-16 (and mine was 64, and the only obvious symptom I had was a rash)...

BTW, welcome to the board, mskelly--lots of knowledgeable, experienced, and intelligent people here. I have learned so much here!

[aikiducky]

Yes, different labs have different scales, you need to know the reference ranges of an individual lab to make any sense of their results.

Pauliina

[jayhawkmom]

Yes, they have different scales. That's why I mentioned that "the specific lab we went through" had X as normal. I had done research prior to obtaining the actual results, so I knew to make sure to ask what "normal" actually was.

I don't know why there isn't a universal scale out there, though!