BlessedMommy

I hear your frustration!

When I first went to the dermatologist with my severe skin rash, he just said that it was eczema which was being made worse by pregnancy and prescribed me a steroid cream. No mention of other causes or looking at any other possibilities. I had bloodwork at the OB/GYN and it never showed much of anything.

I had to figure out on my own with an elimination diet that wheat caused the rash to flare up.

I wish you the best in your efforts to heal! 

Nope, no cake ordering or crouton picking for me! LOL!

that having a dedicated gluten free kitchen is amazing???

I just remove the last 3 cans of glutenous food from my kitchen. I've replaced my cutting board and utensils, thrown out some old pans, bought a new stock pot, done some scrubbing. 

My waffle iron, blender, and toaster have always been dedicated gluten-free.

The stress relief afforded by this move is amazing! I feel so happy that I can cook, bake and make sandwiches without stressing out about double dipping or chopping stuff or setting stuff down, etc.

The only gluten that I can think of in my house now is some shampoo in the bathroom and my fish food. I bought some gluten containing shampoo by mistake so I'm having others help use it up.

Not sure if I'm ambitious enough to make homemade gluten free fish food for my goldfish! LOL!

If you can tolerate certified gluten free oats, how do you like oatmeal? Any suggestions for fun toppings?

I just got a new 25 lb bag of oats and I decided to buy some dried cherries to go with them, because I was getting tired of raisins.

And here is a photo taken when my 3rd child was a baby, so taken roughly about 6 years after the above photo and a couple of years after I quit gluten. What a contrast!

Open Original Shared Link

I wonder if the severity of my reaction on the gluten trial was because I overdid the gluten. I wanted the best chance of an accurate result, so I ate a lot of gluten and had it at every meal basically. No one told me that 1 slice of bread a day would work.

I still am not going to trial smaller amounts, though, just not worth the risk of another TIA, since I really don't know what would happen the next time around.

And looking back to see the photos of how I looked when I was on gluten was fairly shocking. Here is one of my pre-gluten-free photos, when my oldest daughter was a baby.

Open Original Shared Link

Be happy...You've got a long, healthy life ahead of you.

I feel fortunate in that I figured out that I couldn't have gluten in my 20's. My mom and sister probably should both be gluten-free and have extremely deteriorated health (low bone density, tooth problems, all manner of body systems out of whack, chronic fatigue, symptoms after eating gluten, IBS like symptoms, schizophrenia like symptoms, just to name a few) I have no doubt that both of them will have many of those problems permanently. I feel like I've been given a new lease on life in a way, because my health took a downward spin in my early 20's and I'm now in my 30's and doing quite well with fairly good health, after 4 years off gluten. So, really, DX or no DX, I should be very thankful that I figured out gluten was poison to my body before I had permanent health problems from eating it.

I have talked to my mom about getting celiac screening, because it could not only help her but also put another piece of the puzzle for me, but she doesn't have good insurance right now. She says that she has suspected celiac for years, though.

Perhaps genetic testing would help put together more of the pieces for my family.

I really long for the day when celiac testing is inexpensive, non-invasive, not dependent on gluten consumption and readily available to every person who needs it.

LOL!

It is true that even if you have a biopsy proven celiac DX, there's plenty of misinformed people out there. I'm trying to crack down harder on possible CC issues and some people probably already think that I'm insane as is. LOL! That's why I get frustrated and wish that I had a DX, but again, some people have told me that the DX won't solve misunderstanding problems anyway.

I think that when I go to family's house for a day or a weekend, I'm just going to pack my own box of dedicated tools (cutting board, pan, utensils, etc.) and do my own thing, trying to politely turn down food that they make. If they really want to know more, I'll talk a bit about how scary it was to have a TIA in my 20's and talk about the deteriorating health that runs in my family. (If I was a betting person, I would bet money that my mom and my sister both have un'dx'ed celiac)

I guess, what it is, is I really and truly hate not having a DX. I really feel annoyed that circumstances took that chance away from me. And when I read articles like that, it just adds to that annoyance.

When they come up with celiac tests that don't involve gluten challenges, I'll probably be one of the first in line to take them!

Yes, this info was definitely not on this site!

This site has been nothing but supportive, thank goodness!

Just a random vent, I'm tired of seeing stuff about the gluten free "fad diet."

I'm tired of the ridiculous assertions that it's a black and white deal, either you have celiac (diagnosed through a blood test and biopsy) or you're a faker. Because apparently all the medical tests are foolproof and your doctor will always run them promptly if you're showing any signs of celiac or DH. The doctors will ALWAYS figure out the cause of your problem without delay so that you will never have to experiment yourself. And no doctor will tell you that "if you will just go on digestive enzymes, you'll be fine, forget doing any gluten antibody blood testing."

And if you say that you are too sensitive to eating gluten to survive trialing it for 3 months to get a DX, you're a faker too. Because of course, EVERYBODY (without a celiac diagnosis) can survive eating gluten for 3 months. 

Apparently, some of us who are gluten free without a diagnosis are wanting attention and our lives are too boring as is.

Because I apparently made up my whole itching day and night, in pain constantly, needed category C steroids while pregnant thing. Or maybe my neurological complications were a fad. Perhaps ministrokes (TIA's) are now trendy. Perhaps I imagined the whole evening of February 13, 2010 and the ER part was just a mirage.

I just need to stop reading stuff, that stuff is just too annoying!

Why is it harder to get better results when testing a smaller child?

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.