BlessedMommy

My 2 year old daughter is on a regular diet (gluten containing, though not gluten heavy since my household gluten-free) and her check up is coming up soon. Should I mention to the doctor about our family history of problems and ask him if he would be wiling to run a celiac blood panel if she starts showing symptoms?

Or should I not bother discussing it with him until and unless the need arises?

Any good ones that you could share? I'm kind of bored with my current ones. They can have tofu, since we have no soy issues in our house. Recipes with cheese are welcome as well, as there are a couple of dairy free cheese shreds that I like.

That would be amazing to finally get a DX without having to risk hospitalization, disability, or death!

What do you mean by a biopsy in a petri dish?

I would never eat gluten for 3 days, but the 3 day gluten challenge one could be a great one to get my kids DX'ed eventually.

Reviving this old thread, because we found Thai Orchid Cafe's website and they have an entire gluten free menu on it! Open Original Shared Link

Anybody have any experience here?

If you are still having lesions, you could get a skin biopsy. I do not have a formal DX for my gluten caused skin rash, but I believe that a formal DX is best, if at all possible.

I'm seriously thinking of making a gluten free survival kit to keep in my van. It would be just the thing for when I'm short on time when on the road or run into a situation where there's no gluten-free food available.

Has anybody done something like this?

Any thoughts or ideas on good non perishable gluten-free foods to keep on hand? I was thinking dried fruit, nuts, vegetarian jerky (there is a soy based vegetarian brand that's gluten-free), canned fruit, etc.

I'm already a gluten free low sugar ovo vegetarian (which is a difficult lifestyle to maintain as is) and I can't even imagine how complicated and limited my diet would be if I had to remove all gluten free grains on top of that!

Sounds like the "Gluten Free Society" is propagating some false information!

I think that this is a common scenario.  You find out about celiac disease and realize, that is probably why you have been having uncontrollable diarrhea for the past 15 years that you doctor said was IBS.  You go to the doctor with this information and he won't test you for celiac disease.  Your health insurance won't pay for you to go to another doctor.  You try the gluten-free diet.  You feel so much better.  You find out that it wasn't just the uncontrollable diarrhea caused by the gluten but so many other things.  Your insurance changes so that you can finally go to another doctor and you find out that you would have to start eating gluten again to test accurately.  Your gastroenterologist recommends against it since you had been so sick.  Other doctors and people around you treat you like you are some sort of nutcase on a fad diet.  Sign.

Exactly! That seriously nails the nail right on the head.

Or in another case, you run into your dermatologist with a severe skin rash and he never even suggests the possibility of Dermatitis Herpetiformis or anything food related, he just diagnoses it as eczema that's being worsened by pregnancy and sends you home with steroid cream. You eventually figure out yourself that the rash is triggered by heavy wheat consumption and cut back on your wheat, going gluten free eventually. By the time you decide that you want to tested for celiac, your system has sensitized to gluten to the point where that experiment turns out to be dangerous early on and ends in hospitalization just a few days into it.

You now are gluten free without a diagnosis, because to do otherwise would be a form of suicide.

*sighs* (that's my reality)

Thanks for all the input. I'm committing to really working harder than ever at keeping accidental gluten away.

My mood is great right now and I'm not feeling with anxiety and worry. I hope that this is a sign of good things to come!

My OCD has been really flaring up lately.

I've learned since I joined this board, that I've made some mistakes in being gluten-free and not always been as careful about CC as I should have been. I thought that I didn't get violent symptoms when getting trace amounts of gluten (usually got a flaming itchy red face or the start of a skin rash, my primary symptom before gluten-free was skin problems and I often got no visible symptoms at all from mistakes like washing out a wooden utensil and using it on gluten free food) but could worsening OCD be related to gluten?

I went on vacation recently. When I got home, I have been transitioning my kitchen over to being exclusively gluten-free, because it's just too much hassle to do otherwise.

Thoughts?

I think that some people think that "sensitivity" is limited to throwing up, hives, and other obvious problems, so I'm not sure how much sympathy I would get if I said that I thought that gluten made my OCD and GAD worse.

Edited to add that GAD stands for Generalized Anxiety Disorder. I think that most people already know what OCD stands for. 

I mostly shop at my wholesale/retail outlet for bulk items and only rarely buy Amish bulk anymore. When I did, I just read ingredient lists thoroughly, though I'm sure that approach carries a higher risk of CC than buying items only from a manufacturer that you trust.

The items that I was mainly referring to in my primary post were all mainstream gluten free brands that were dented or otherwise damaged in some way, thus making them a steal of a deal!

My wholesale/retail outlet sells Bob's Red Mill certified gluten-free oats in 25 pound bags for $55 and has many other deals as well, like 5 pound bags of whole teff, etc. 

That is totally unacceptable! I would definitely file some sort of a complaint. Sorry that you got that treatment!

I buy my Bob's Red Mill certified oats in bulk--25 lb bags. 

It's hard, very hard, when you have multiple issues going on at the same time. In addition to gluten intolerance, I can't tolerate dairy either and use very little sweeteners or sugar, due to a weak immune system.

It sounds like you've done a really great job of stepping up to the challenge though and making the best of it! That must be incredibly difficult. 

I just looked at the Glutenfreeda brand instant gluten-free oatmeal that I bought there--only 75 cents. LOL! Pretty sure that I couldn't even buy regular instant oatmeal for that price at the grocery store.

I love going to bent and dent stores! We have a couple of good Amish run ones in my area and the finds there are amazing! Just for example, today, I found certified gluten-free instant oatmeal, gluten free granola for 89 cents a bag, etc.

It's pretty easy to feed gluten-free stuff to my non gluten-free eaters and thus keep a gluten-free house, when the gluten-free is cheaper than the regular! LOL! I found gluten-free crackers there for 99 cents a box, the only thing wrong with them was that the box was a little bent up. 

Mostly, we focus on naturally gluten-free foods like fresh fruits and veggies, beans, eggs, quinoa, etc. but when we want some treats or convenience foods, it's nice not to pay an arm and a leg for them.

I have found Tinkyada pasta at one of the salvage stores for less than $1 per bag and nothing was wrong with it. I'm guessing that some store discontinued carrying it and shipped it over.

How do they know what percentage are undiagnosed if they never get diagnosed? 

Yep...it does work both ways and really is no one's business.  Especially considering the less than stellar experiences of some folks trying to obtain "official" diagnosis

Exactly! Some people don't realize that getting diagnosed with celiac is no small feat in today's world if you don't have classical symptoms and if you traced your symptoms to gluten and cut it out before you knew that you were supposed to keep eating it.

Be very, very careful with doing your gluten challenge!

My chronic severe headaches while doing my gluten challenge progressed to neurological complications such as difficulty speaking and numbness on my right side. When I got to the hospital, they diagnosed it as a TIA. I quit gluten and have never had another one since.

Just be careful and take care of yourself!

I understand your situation! What I would say, is if you ever do try to do a challenge, be sure to have doctor supervision. 

I wound up in the hospital 10 days into my gluten challenge with neurological complications from severe headaches. We decided that that was my answer and I went gluten-free for good. 

I didn't recognize it all the time but looking back my first pregnancy is when my symptoms started....that was 6 years ago

Yup! When pregnant with my now 7 year old, I got a serious systemic skin rash, that I eventually traced down to gluten. 

I hesitate to say I'm actually celiac, what I usually revert to saying is that I'm severely intolerant to gluten and wound up in the hospital after just 10 days of trying to eat it to get a celiac DX. I explain about my neurological complications and TIA that I had. And many people remember the severe systemic skin rash I had during my first pregnancy that I eventually resolved by cutting gluten.

I do struggle with psychological issues as a result of my lack of DX and I wish that I had one. But I can't risk getting disabled or dead to get one--so I'm stuck where I'm at, until medical science comes up with a better DX option that doesn't involve hospitalization or permanent disability.

I'm glad that you're getting some answers!

It seems that very little with celiac testing is black and white/foolproof, so I'm glad that your doctor realizes that it's possible to miss the damage when doing a biopsy. 

I hear your frustration on not being able to get a diagnosis! I have a similar story, my pregnancy brought the gluten issues to the forefront through a serious systemic skin rash. Through an elimination diet, I figured out that when I avoided wheat, the rash was much better, but when I added wheat back in,within 3-4 days the rash was coming back in the same spot even!

Eventually I did want to get tested for celiac disease and I went on a gluten trial. After 10 days on gluten full time, fatigue, swelling, feeling miserable, and chronic headaches, I had a TIA (ministroke) from the headaches and wound up in the ER. At my follow up with my doctor, he concluded that the gluten was the cause of the TIA and told me to "just stay away from the gluten."

That was 4 years ago and I immediately went gluten-free from that day on and have never had any more of those frightening types of symptoms since.

So, in my case, I won't be able to get a diagnosis until medical science progresses, because eating gluten for 3 months would likely kill me.

So I can empathize at the lack of options for those of us who arrived at our path a different way. 

I found this bread at my local Meijer's and oh wow, yum, yum, yum!

I'd pretty much given up on having bread, but I think that I finally found one that I feel good about paying $5 a loaf for! I'm feeding it to my non gluten-free husband (I'm transitioning my house to a gluten-free only house) and he likes it as well.

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