Dx Kids Vs. Dx Adults.... Do Symptoms, Reactions To Gluten Differ

[Jnkmnky]

[tarnalberry]

I'll do it, depending on the food, and haven't had a problem. There are some companies that are better at it than others, and some foods that more easily pick up contamination than others. She may have gotten no gluten at all.

(Anyone who uses a stainless steel pot that's shared for gluten and non-gluten uses, or uses the same eating utensils that's shared for gluten and non-gluten foods, is having food "made in a factory that also uses wheat". So, if you share those items, but you clean it thoroughly, you can see how it's *possible* that there wouldn't be a concern. Of course, there could be if the cleaning wasn't done thoroughly enough. But it can be done that thoroughly.)

[katerinvon]

My son was dx at three. He has been glutened twice that I'm aware of. Maybe one other time with no noticable symptoms. Do you think or have you found that an adult, with years more of damage being done, vs a kid with just a few years of damage under their belt, has more "sensitive" reactions to smaller amounts of gluten? Was that clear?

See, I normally wouldn't even give my kid something processed on Machinery that shared wheat- washed or not. However, I did do just that recently. He had no observable reaction. Ok. I didn't feed him wheat..... Just let him eat some chocolate that claimed machinery shared lines, though cleaned. Normally I wouldn't even do that, but I was thinking, my kid just may be able to "handle" micro-trace amounts of gluten since he had three years of damage vs. the average 11+ years. Anyone have an opinion on this?

Anyone regularly eat food processed on "shared equiptment" with NO noticeable symptoms? Or have you done it and gotten sick because you feel you're that sensitive? Is it, in your opinion, due to many years of not being dxed?

You know, with all the unanswered questions, celiacs pose an enormous opportunity for "study"!

It's kind of nice not to be restrained by "Medical facts" and be able to persue our own thinking, logic, observations and straight-up opinions!

My son also has no other food sensitivities, no allergies, no other intolerances. Just the gluten. Do you suppose this is due to the relatively "quick" dx?

These are the same questions I have been asking, and not really finding any answers. Our daughter reacted to whole wheat bread close to her first birthday, and we stopped giving her wheat right away. We also started researching, and took her off gluten soon after. So far her only symptoms have been loose stools and bad diaper rash. Because of limited exposure, limited damage? Our ped is reluctant to consider celiac disease because she is otherwise healthy. But even if she has celiac disease, wouldn't she be healthy if she has been on the diet for a year and had limited exposure prior to that? It makes sense to me.

I feel like a paranoid mom, keeping her on a strict diet with no real diagnosis, but I'm afraid to take her off for fear she could get really sick. Even scarrier, my ever practical husband agrees with me.

My daughter doesn't have any other alergies ar intolerances except perhaps to amaranth, which seems to cause a similar reaction (cross contamination?) And she doesn't seem to be affected by trace amounts from cleaned utensils. She actually has to take a bite or two. (It's amazing just how fast a toddler can take one or two bites!)

If anyone else has thoughts on this, I'd be glad to hear them, too.

Karen

[Carriefaith]

Anyone regularly eat food processed on "shared equiptment" with NO noticeable symptoms? Or have you done it and gotten sick because you feel you're that sensitive? Is it, in your opinion, due to many years of not being dxed?

I don't seem to tolerate gluten free food that shared the same lines as gluten food. Sometimes, I can't even tolerate gluten free food produced in a facility with wheat. I'm not really sure why some people react to these foods and others don't. It's a question that I have and I haven't figured out an answer.

[jerseyangel]

Thanks for bring these questions up. I've been wondering about the same things and thought I must be missing something. Personally, I find that food and products both, that are made in the same facility with wheat or any gluten bother me more times than not. I am avoiding them for the most part. There are a few things, though that I can use and get away with. I was sick for years, but DX just this past June. I've had a lot of improvement for sure, but am very sensitive. I'm extremely careful about what I consume and use, don't eat out and keep a 95% gluten-free kitchen. Replaced almost everything. I keep a pan to be used for gluten items in a pinch and have not used it yet. I'm the only one who cooks, so I have control over keeping the kitchen clean, etc. It makes sense to me that your son, DX at an early age and kept gluten-free, would have far less damage that a person misdiagnosed for many years. I believe, in general, kids heal faster. I look forward to hearing other's experience on all of this.

[Jnkmnky]

[jerseyangel]

I would have to say that a lot of my issues are because of my late Dx. For example--there are things that have improved or gone away completely since going gluten-free. My anemia, shoulder, hip and neck pain, dizziness, brain fog, hair loss, skin problems and the neurological symptoms are all greatly improved. This would tell me that these things, all coming on gradually through the years, had to have been caused by the response to gluten. A direct cause and effect. As for my additional sensitives, I would have to think that the gluten response/leaky gut over time is to blame. I have trouble with eggs, soy, corn. As a child, I was fine with them. These also seemed to come on over time. Again, I was sick for a long time--not knowing what was wrong, despite seeing lots of doctors along the way. Its hard, then, to be sure which of these things happened first and in what order--but yes--I feel that the years of misdiagnoses, inappropriate medicines (I am now allergic to almost every antibiotic out there and won't go into the long term side effects from the steroid injections), and consuming gluten are responsible for the spot I find myself in today. Your son, hopefully, will be spared a lot of these issues. I believe you're right in feeling the way you do about that given that his Celiac was caught early. Hope this helps.

[Jnkmnky]

[jerseyangel]

If all your shouting about Celiac helped even one person--it was beyond worth it. I use any opportunity to get the word out and try to educate as many as I can in my own life. I figure if their eyes don't glaze over midway, I'm on to something. --Shout on!

[par18]

[i'm Adult age 55. Dx'd in May 2005. Have had no symptoms since going on gluten-free diet. At first I was concerned with cross contamination but now I will look at labels and consume if no gluten listed. It may be hard to determine what your sensitivity would be based on my experience. The other day I had my first french fries and shake at McDonald's in 7 months. The manager said the oil for potatos is used only for potatos. I then ordered and ate the fries with the shake. I had no reaction. I think I am getting more comfortable with venturing back in the world again. I would not hesitate to call a vendor or ask questions to anyone (including family) before eating anything suspect. I guess I could be ingesting trace amounts of gluten but with no symptoms how would you know. The bottom line is I fell good after I eat and that is all that matters.

[Merika]

Hi Jnkmnky,

I think we'll be seeing a lot more of these signs "made in a facility shared with wheat, etc..." now that the new labeling laws are going into effect. It does make me pause when i see it on a label, that's for sure. For the most part, though, I'll still eat it. I don't think it makes me sick. But then I'm not completely healthy (yet?) either, so maybe I'm not the best judge.

There are products out there that are gluten-free, but make me sick, and I can't figure out why - I don't think it's contamination, I think some things, due to processing, or whatever, are just harder for me to digest.

Like Tiffany, though, I'll also consider what the product is. For example, I would not want to eat gluten-free bread made in a non-gluten-free bread factory. Yuck! Too much flour floating around in the air!

Merika

[Matilda]

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[Jnkmnky]

Thanks for the very nice compliments, Matilda.

[shayesmom]

I also think that people (adults, some children) develop problems with other things like dairy, soy, corn, and really anything else, but most of thse things get better as the underlying celiac disease gets better. And it definitely seems that children get better quicker. I think while people are healing it's very difficult distinguish reactions to gluten fron reactions to other foods, especially the difficult to digest new foods that people add into their diets, and distinguish all that from the general day-to-day crappiness that goes on until

people suddenly start healing. I wouldn't be at all surprised if children go through the same things, but just quicker, and without worrying about it.

My daughter also developed problems with these foods. But I wonder at times if it might not be because each of these foods blocks the absorption of certain vitamins and minerals which just compounds the malabsorption problems associated with Celiac's. Dairy blocks the absorption of iron, soy blocks calcium, magnesium, copper, iron and especially zinc - in the intestinal tract and corn blocks the uptake of Niacin (Vitamin B3). It's hard to say. And strangely in my dd's case, her food allergies actually got worse AFTER we went gluten-free. I suppose that as she started to detox, it became easier to pinpoint the allergens but in the case of dairy and eggs.....she really did become MUCH worse after being gluten-free for several months.

I also wonder if perhaps the reason older dxed celiacs have higher degrees of sensitivity is due to zonulin-induced leaky gut and blood-brain barriers. Zonulin (mammalian protein) seems to be a key factor in celiac's, diabetes, MS and rheumatoid arthritis and people with these diseases have as much as 35x the levels of zonulin that "normal" people do. Zonulin is said to open up the spaces between cells and aids in creating a leaky gut, thereby allowing gliadin to permeate the intestinal walls more easily (and in some cases, the blood-brain barrier.....explains the brain fog). Perhaps the real difference in sensitivities amongst celiacs is not just time and exposure, but levels of this human protein found in the body? It seems possible. And there's even talk of a zonulin-suppressing pill to reach the market by the end of 2006 which would allow both celiacs and diabetics the opportunity to eat "normal" diets. Don't know if I want to jump on that bandwagon just yet though. We'll probably hear about how it causes cancer in a decade or so. But still, the research is interesting and actually discovered quite by accident.

[Merika]

And strangely in my dd's case, her food allergies actually got worse AFTER we went gluten-free. I suppose that as she started to detox, it became easier to pinpoint the allergens but in the case of dairy and eggs.....she really did become MUCH worse after being gluten-free for several months.

This happened to me too, and other celiacs I know (adult). In fact, it took me well over a year to start to feel better after I started to feel worse gluten-free. The first few months gluten-free I felt great, then everything got worse for a long time.

Merika

[jerseyangel]

Something similar is happening with me. I was DX at the beginning of June. After the first 3 months or so, I felt much better. Actually, Oct. and Nov. were great. I felt well, and thought the worst was over--I thought that if I stayed gluten-free as I had been, that was it. Well, Dec. is proving me wrong! I accidently got some gluten thru cross contamination almost 3 weeks ago, and am having a hard time coming back from it. I had a few good days last week, but 2 hours after drinking homemade cocoa (rice milk, cocoa, sugar) on Monday, I began having cramping, nausea and not D, but going 2 times a day, and a constant dull pain in my upper stomach area. Today is a little better, not much. It was interesting to read that some have gone off gluten, felt better, and then got worse for a while. I think I need to hear that I'm not alone with this situation--my timing is excellent with Christmas and everything