BlessedMommy

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.

Open Original Shared Link

I'm actually planning on making my home entirely gluten free, but wanted to have something washable, just in case. 

Right. I was hoping for something that wouldn't scratch the pans, though.

The main thing that scares me about deviled eggs is the fact that someone may have made them with a CC'ed jar of mayo. If you can verify that the mayo is gluten free and that the person making them didn't CC them, probably no reason to stay away.

Are there any good alternatives to wooden spoons that are easily washable? What about silicone? Can it be easily washed and cleaned if it comes into contact with gluten?

Yeah, knowing what I know now, I would've never dropped gluten before getting lab tests. Maybe someday they will come up with diagnostic methods that don't require gluten ingestion to work.

Just curious if anyone who tried gluten-free before testing actually made it through a gluten trial. I was hospitalized after just 10 days of gluten trial and I had to stop for sheer survival. (had a TIA which affected my speech and made my right side numb, I really didn't want to go on to have a full blown stroke!)

It seems that my experience may not be that unusual, though many people last longer than 10 days!

Did anyone actually do a gluten trial and go on to get properly diagnosed? I was reading a blog post about someone who did a 2 month gluten challenge, suffered through really bad symptoms and went on to get blood tests--which were negative anyway.

Can genetic testing rule out celiac?

If your one teen was unable to tolerate any gluten after elimination, then how did they get diagnosed? Did the doctor diagnose based on symptoms and genetic tests?

How could it help the other family members?

Nope! It's a little late for that....I already have 3 kids. LOL!

Yes, please make sure that you get your doc to run the celiac panel before going gluten-free. Otherwise you may lose your opportunity to get a diagnosis, forever. In my case, gluten-free helped me and when I went back to eating gluten, the symptoms were very dangerous and severe so I couldn't finish the gluten trial and will never get a diagnosis.

I don't necessarily want to order "fringe tests" but I don't necessarily want to order through my doctor either. 

I suppose that a normal private lab (not an internet lab) would have the basic tests that I need.

Where could I get those tests?