I'm So Confused....

[celiac-mommy]

So an update on my DS, he had the d for 2 weeks straight, started a gluten-free diet for trial, eczema cleared up, he started eating everything I put in front of him, but poo stayed mushy until sunday--1st solid BM in 3 weeks!! I was so happy for him. We went to a superbowl party, I was in total control and then someone left their bowl of pretzles on a chair (about 5 minutes before we left) I tackled him trying to get the pretzel out of his mouth, which of course made him chew and swallow faster. 2 weeks of hard work down the drain--maybe--he had d again that night. I'm just so confused--was it a coincidence or not? He had only one solid BM in 3 weeks...... I'm anxious to see what the dr says this afternoon, I was just curious to get other's opinions. This is so much more stressful with a 2y/o versus a 4 year old. She understood and NEVER put anything in her mouth she wasn't sure of. He looks for stuff to shove in his mouth

Thanks for any advice.

[Ursa Major]

Rachelle, I think that the eczema cleared up and he was eating well are definitely signs that gluten was a problem. Sometimes it takes a while for the bowels to settle down, so a solid bm after three weeks is still good.

And then immediately having D again after eating those pretzels......... I say that is no coincidence. I see in your signature that he tested negative on his blood work. You do know that testing at his age is highly unreliable and might not mean a thing, right?

I don't know what help your doctor would be at this point. If he was my kid I'd just go right back to the gluten-free diet, and try to be a little more vigilant (I know, two year olds are quick and don't understand).

Your signature says that both you and your husband tested negative. So are the two of you still eating gluten then?

Since the kids got their celiac disease/gluten intolerance from SOMEBODY, you ought to try the gluten-free diet yourself, you never know what kind of issues you would never relate to gluten might clear up.

[celiac-mommy]

Your signature says that both you and your husband tested negative. So are the two of you still eating gluten then?

I eat very little gluten, I've never had any health issues other than thyroid, but that was from a medication my mother was taking while nursing me. My husband, on the other hand, has had intestinal issues his entire life and since the blood work on him was negative, he sees no reason to change--and won't, no matter what I say. I'm positive he has it. Our household is 98% gluten-free-just my bread and cereal. I will continue with the gluten-free diet no matter what the dr says--for now at least to make sure all the symptoms clear up. Our GI tested him around his 2nd birthday, but he was quick to say that this wasn't a for sure thing, and if ANYTHING changes to look into it again. So that's where we are right now. I just want to make sure I'm making the right decision for him. I would like to have the gene testing done, but it's very expensive. I'm so afraid that I will make the wrong decision....

[Ursa Major]

You know that Enterolab does gene testing, too? They charge a ton less than other places for just gene testing.

Even having the whole panel done for your son (including the gene testing) is less expensive than just gene testing from regular labs, from what I have heard.

[celiac-mommy]

I looked up the info from enterolab, I will look into the lab fees for our lab, although, I have to pay the deductable first (350$) so it might be a wash, BUT, if he needed anything else done this year, the deductable would already be paid. I'll find out more this afternoon. I would like a host of testing done to see if there's anything else he's allergic to. 2 days later and his BM's aren't normal....

[gfgypsyqueen]

Two yr olds are so much fun My two yr old went Gluten-free Casein-free in August. She had her first solid poop pretty quickly after that. I mean her first in her two yrs of life! She has picked up the idea that she can't eat just anything. And yes, she is also that high strung, "no" does not apply to her, and if in doubt - lick it- kinda kid.

Sounds like your kid showed a solid positive response to the gluten-free diet. I would just continue the diet regardless of what the dr says. It sounds sad, but I use these controlled accidenets to learn the symptoms of that child. My daughter gets a rash and then the diahrea starts the next day. Just knowing that much has helped to figure out if she got glutened or got sick.

BTW, it takes me about 1 week to start feeling not aggitated at everything and at the end of two weeks I start feeling ok again. My daughter is out of control for 48hrs, the insanely itchy rash shows up during this time and lasts for several weeks. The diahrrea can take several day to stop for her. Plus she has no appitite for at least 3 or 4 days. So I would expect close to a week before your little one starts looking or acting normal again.

The closest I ever got to a diagnosis for her was an inconclusive biopsy and a positive gene test. So in the end, I spent a lot of money on testing that got me no where. Then the Dr fought hard agianst me putting her on the "life sentence of the gluten-free diet". As you can guess, she is 100% gluten-free/cf now and we no longer go to that dr. And the pediatrician finally agrees that she must have celiacs because the diet is working for her. He was originally very much against the idea that anything was wrong with her.

I tell my two yr old that the gluten food will "hurt her tummy". She seems to understand the idea of an ouwie. She has figured it out pretty quickly and now asks if she can eat something before she tastes it. At least most times she asks first!

[celiac-mommy]

Just came back from the peditrician. He said it sounds like he has at least a wheat allergy if not celiac disease. He has a bunch of questions that he needs answered before we move fwd, so he's going to conference with our GI and get back to me tomorrow. He wants me to keep him off wheat/gluten before we do anything else. He says he knows enough to know there's an issue, but needs to learn more before he can make a decision. I totally respect when they can admit when they need 'help' (I work with a bunch who think they know everything!!) I'm anxious to hear what he says!

Do you know what the incidence is of one sibling having celiac and another just having an allergy but not the autoimmune disorder? I guess I thought they were the same thing. Just when I think I have a handle on this, I get thrown something new!

[gfgypsyqueen]

Actually the allergy to wheat affects the histamine levels in your body. The Celiac reaction to wheat affects the cells in your intestines - nothing to do with histamines.

I think I have both wheat allergy and celiacs. Never been tested for the wheat allergy. But, since going gluten-free, if I touch a glutne product, my hands swell, crack open, and bleed. Consuming a wheat is 100 times worse than that. Everyone swears you cannot absorb gluten through the skin, so I assume I must have an allergy because I have a distinct reaction.

I dont know the incidence amoung siblings. In my house, one kid has anaphylactic allergy to peanuts and tree nuts. We were told to keep the younger sister off of all nuts until she is 5 in hopes of avoiding the nut allergy. Turns out the younger sister already has Celiacs and also has a dairy allergy, shellfish allergy, something else is bothering her. She is going to the allergist soon. So I understand the "just been thrown a curve ball" feeling!

Sounds like your dr is great to admit he needs to do more research. Good luck in finding the problem.

[celiac-mommy]

Actually the allergy to wheat affects the histamine levels in your body. The Celiac reaction to wheat affects the cells in your intestines - nothing to do with histamines.

Sounds like your dr is great to admit he needs to do more research. Good luck in finding the problem.

Thanks for the info! I talked with both the pediatrician and GI yesterday. They want him to see the GI on 3/4/08 go gluten-free until a week before and then load him up that final week to bring back symptoms--if this is what it is. I totally understand why they want to do this, but the thought of it is making ME sick. I guess we could do this and it could turn out that Celiac/wheat isn't the issue. I will have to wait and see. His symptoms were/are so different than our DD (which I know doesn't matter--EVERYONE has different symptoms), I guess my gut is giving me conflicting feelings. One minute, I think there are so many changes I've seen in him since going gluten-free that it can't be a coincidense (sp?), but there's another part of me that really doesn't think this is it. I'm making myself sick with all of this--not to mention all the other stuff that's come up lately with other family members. I know God doesn't give you more than you can handle at a time, but He's really testing me right now

[Darn210]

Thanks for the info! I talked with both the pediatrician and GI yesterday. They want him to see the GI on 3/4/08 go gluten-free until a week before and then load him up that final week to bring back symptoms--if this is what it is. I totally understand why they want to do this, but the thought of it is making ME sick. I guess we could do this and it could turn out that Celiac/wheat isn't the issue. I will have to wait and see. His symptoms were/are so different than our DD (which I know doesn't matter--EVERYONE has different symptoms), I guess my gut is giving me conflicting feelings. One minute, I think there are so many changes I've seen in him since going gluten-free that it can't be a coincidense (sp?), but there's another part of me that really doesn't think this is it. I'm making myself sick with all of this--not to mention all the other stuff that's come up lately with other family members. I know God doesn't give you more than you can handle at a time, but He's really testing me right now

Why load him up for a week? Do they think that they can test him at that point? - Because a week isn't long enough. Or are they just wanting to see the return of symptoms? - Which it doesn't sound like you would need a week to accomplish this.

If you're not sure which it is, I would talk to the doctor. Have an article or two ready to email them that tells them that 2 months or more of ingesting gluten are required for testing. If it's just to see if the symptoms come back, I would ask if you are allowed to stop once the first sign of distress shows up . . . no need to continue on. One of the doctor's that my daughter saw wanted her to go on a gluten challenge for two months and then repeat her blood test. However, he said during that two months, at the first sign of GI symptoms (in her case acid reflux) the challenge is over. You don't keep ingesting gluten for the test - no test is needed. You're postive based on dietary response. I would check to see if you can stop with the gluten once you witness a return of symptoms.

[slee]

I just wanted to tell you how this has worked out for my son... he was on and off gluten several times during testing, because he saw several different doctors, each who said when their test was complete he could go off gluten... in the end he had been off gluten for 3 weeks, the doctor told him to go back on for 2 weeks to do a bioposy (since he'd only been off 3 weeks) He was miserable the whole time. She said if the diarrhea came back they should be able to see it on bioposy, but in the end things were inconclusive. The bioposy itself looked okay, but his disaccharidase levels were down, which can indicate healing of the villi. I think that this was due to him being gluten free until just 2 weeks before the bioposy. My son is 21 months, so not to far off the age of yours, it's such a hard call... my son showed positive dietary response 4 times on and off gluten, and got sick right away each time back on... I wouldn't be convinced 1 week is enough... I might look further into that.

[celiac-mommy]

He just wants to see if the symptoms return at this point. Based on the blood tests we had done before, our GI (who I really do like and trust) isn't convinced that it's gluten. He was very quick to say that if he ever does exhibit symptoms to call and we would re-evaluate, which is where we are now. I guess it was pobably my fault that I took him off the gluten to try, see if things got better. I was deparate to make him feel better. The GI wants to see how the stooling patterns change, the diaper rash and eczema. If we have symptoms right away, then I know the answer. I won't go thru the biospy no matter what he says. I'm OK to redo the blood tests, fecal allergy stuff, etc.. and will talk about the gene testing, which I know he's not too keen on. My DD was so sick at the time of her diagnosis that they treated it as though it was acute. Max hasn't been as sick, so they're both fine to wait a little longer...

[AliB]

Hi Rachelle.

Please be assured that any negative result for Celiac either in blood tests or biopsy does not indicate that you have NO gluten intolerance.

EVERYONE is intolerant of gluten to a greater or lesser degree. Very extreme cases of gluten intolerance can appear on a biopsy to be indicative of Celiac, and even be diagnosed as Celiac although no genetic markers are found. At the end of the day, whether the problem be due to Celiac or gluten intolerance, the outcome, and the solution are the same thing.

Wheat gluten (and by extension rye and barley) has been modified into such a complex protein that we are unable to digest it properly. Even low-level GI damages the gut enough to stop it being able to absorb essential nutrients. It may only be a few, but that is enough to impact on the way cells work within our bodies, causing any amount of different illnesses and diseases.

Although your husband's results were negative, his symptoms more than show that he is at least gluten intolerant and probably dairy intolerant as well. Unfortunately it will not get better and by continuing to eat gluten he is setting himself up for further problems as the nutrient deficiency really starts to bite.

His reluctance to stop eating gluten really shows just how evil and insidious it is. It is a delight to the eyes and a feast for the palate and it is enjoyably deceptive. Would he eat arsenic if it tasted nice?

As I said, we are ALL gluten intolerant. Some show symptoms at an early age, many not until later, others still show no or merely vague symptoms at all perhaps for years until the damage suddenly becomes apparent when they develop more serious conditions such as rheumatoid arthritis, fibromyalgia, multiple sclerosis, or worse.

I know it will be hard, but the kindest thing you can do for your little one is to get him off gluten as soon as possible before any more damage is done. If you can convince your husband and all go gluten-free it will be easier in the long run as you will all be eating the same things. I am working on my family at the moment, my two young grandsons have issues I believe to be lined to gluten intolerance. My daughter is coming round to the idea and will speak to the school tomorrow to see if they would be prepared to give them gluten-free meals.

The more that realise the danger of eating gluten and demand gluten-free products, the more will become available and the less it will be seen as a 'fad' or a peculiarity and will become the 'norm' and so much easier for everyone.

I hope you manage to resolve this ok.

[celiac-mommy]

My son has been off gluten for about 3 weeks now. He's only had 2 solid BM's, it's not consistant at all. No more rashes, skin issues, he's eating really well, talking a lot more, throwing less fits--still a little ornery, but he's 2 As far as my husband goes, we talked more about it last night. He's lived like this for so long, he's learned how to deal with it and he doesn't care! We eat gluten-free at home (other than my bread and cereal which he won't eat anyway) There's nothing else I can do. I've got him (he think's it's his idea) to work out now 4x a week, he's riding a bike about 60 miles a week and plays basketball once a week. I'm very proud of him for that, but I told him last night that he probably can't lose any weight because of this gluten issue. I said why not try it for a while, see what happens, how you feel, if you lose weight, etc... but he just laughed it off. Although I'm in the medical field, he doesn't think I know as much as I do. I could have my MD in ANYTHING and he knows everything. Until he makes up his own mind to change, nothing helps. All I can do is quietly plant seeds into conversations and eventually (like with the exercise) he will decide "on his own" to do it and I just sit back and say "that's a really great idea hun" and scream in the back of my mind "it was MY idea!!!!" I guess it's worked for almost 10 years, we must be doing somehting right I will keep Max off the gluten and see what the dr says. That's all I can do at this point. I just wish his BM's would harden up!!