BlessedMommy

I've been gluten-free for 4 years. My story is below in my signature. I've never had a celiac blood panel.

Would there be any point to genetic testing?

I don't have an actual celiac disease diagnosis, because my symptoms resolved when gluten-free and then when I resumed eating gluten, I had a TIA caused by chronic headaches on the gluten trial. That happened only 10 days in. Doing a 3 month gluten challenge would be a disaster!

So while I would've loved a real diagnosis, I don't have the inclination to risk death, hospitalization, or permanent disability to get one.

However, that means that I don't have any doctor's guidance and I sometimes wonder if I'm doing things right or if I'm truly healing. My regular family doctor doesn't know much about things, he just told me to stay away from gluten, but that "a little bit probably wouldn't bother me."   

I also don't know whether I have celiac or NCGI either. 

After 4 years gluten-free, would celiac tests do me any good? In other words, if I took a celiac blood panel would it tell me if I'm being successful enough at following the gluten-free diet? Or are the tests not sensitive enough to detect minute levels of gluten in the blood?

Also, what about tests to check my nutrient levels? Are there any ones in particular that are recommended for celiacs/NCGI?

I just had to share a positive story of supportive people, since it seems that many of us have to deal with people who aren't very helpful or supportive in our gluten-free diet.

I'm on vacation. At our prior place to stay, our friends were very supportive about avoiding glutening. They even made a separate jar of mayo for us and labeled it "gluten-free." 

At our current place to stay, I went to a potluck. My SIL's mother-in-law (so my sister-in-law's husband's mother) had made a dish of vegetarian oat burgers. She had gone out and bought some Bob's Red Mill certified gluten-free oats to make them with, and then she went so far as to make them FIRST, before making the regular ones with bread crumbs. At the potluck, she told me to go dish up some of my salad and set it aside before anyone had a chance to drop crouton crumbs in it. 

My SIL made me some vegetarian loaf with tofu and gluten free bread crumbs and she pulled out a portion for me before adding the topping, because as she said, "I'm not sure if the jelly in the topping had crumbs in the jar or not."

It's so great to have people around who do their best to understand and accommodate the celiac diet and don't make fun of me for taking precautions against CC.

Yay!   

I think that I'm going to keep my metal colander too and just make sure that it's cleaned well. I don't even remember the last time that I ever made normal pasta in our kitchen. Hubby always eats the gluten-free stuff.

Thanks! I'm relieved that I don't have to get rid of it. I'll give it a good scrub down with some vinegar.

Oh, one other question, does anybody know what I should do to sterilize an enamel coated stock pot? The style is similar to this one. Open Original Shared Link

With a mixed kitchen, that is! LOL!

I'm so tired of worrying about getting cross contaminated at home. I just want one safe haven in the universe where I don't have to worry and can be safe and comfortable. I want some time in my life where I don't have to think about gluten so much!

Any tips for making my kitchen exclusively gluten-free? We didn't use a lot of gluten in my kitchen to begin with as most of our family meals are gluten-free.

My toaster & waffle iron have never made any gluten containing food, so they're good. I put my cast iron pan in the oven for the self clean cycle and then reseasoned it, so that should be good now. I don't think that I've ever blended anything with gluten in my blender. I'm thinking that maybe I should dispense with my non stick pot, since that's a porous surface and replace it with a stainless steel pot.

I'm thinking that I'll talk to hubby about replacing wooden spoons and plastic spatulas with metal stuff. Then giving everything a thorough scrub down! I've trained my husband not to double dip in condiments, so all condiments should be safe.

The main area where I was using gluten was to make hubby's lunches. (regular bread for sandwiches) I think that I'm going to try alternatives like sending him hot meals in a crockpot, or sending a rice cooker to work with him to plug in and make spanish rice.

Any other recommendations of good spouse lunches?

I would like to find a good pediatrician for my kids that is knowledgeable in celiac disease and is also respectable of alternate decisions regarding vaccinations. Where would I go to find that info?

I believe that you can get the celiac blood panel through a private lab.

I ran across this. What do you all think?

Open Original Shared Link

Not an option for me, as I would never risk eating gluten for 3 days but something like that could be very useful for my kids. 

I'm not vegan either, I'm an ovo vegetarian. Love my fresh eggs from my neighbor's chickens!

Jam & soymilk were a couple that surprised me.

There was a brand of jelly that had wheat glucose syrup in it. Some soymilk is barley malt sweetened.

So, I'm gluten free without a diagnosis. My story is below in my signature. A few years ago, my kids were suffering from skin issues (eczema, etc.) and I took them to the doctor and asks for blood tests for allergies.

The doctor said that the best way to DX allergies is through an elimination diet and declined to run any tests. I took them to a naturopath and she said gluten and dairy intolerance so I worked on cutting out things. Their skin improved. My oldest gets a painful raw rash around her mouth when exposed to gluten. (has no response to CC though, it actually has to be a substantial amount, like say 1/4 of a slice of bread or so)

My 5 year old has very little reaction at all, in other words, after a couple of days eating something with gluten in it, he will start breaking out in a rash.

My 7 year old has vitiligo, which may or may not be related to the gluten. Who knows?

Anyway, they've been loosely away from gluten since the fall of 2009, basically to the degree that is needed to keep their skin flare ups at bay. Their diet has not been "celiac strict" by any means.

I regret listening to that doctor's advice, because honestly at this point, I don't know if they have a minor sensitivity to wheat or celiac disease. Honestly, I wouldn't suggest anyone try to put their kid on a gluten-free diet without a doctor's dx, because controlling what goes in your own mouth is one thing, but doing your kid's diet is a whole different ball park! It's easier to justify to people how strict I need to be with my diet, since I've had a TIA from eating gluten.

My mother-in-law suggested that if my daughter wants to eat gluten when she's older that she could buy make up to hide the skin rash. That suggests that people won't really take the kids need to follow any diet seriously unless there's some sort of medical diagnosis.

So, after having the kids mostly off of gluten for 4+ years, what options do I have? Should I do a 12 week gluten challenge and then take them to a private lab for blood testing, since my doctor won't send them for tests? 

Knowing what I know now, I would have never had my kids do any semblance of gluten-free without tests, but I have to work with today, not what I should've done yesterday.

My youngest child is almost 2 years old and does eat a typical gluten containing diet (though not gluten heavy) and has no symptoms of any problems so far.

That's wonderful! Great job sticking to the restricted diet, I know that it isn't easy. I'm vegetarian, gluten free, dairy free, and mostly sugar free.

If someone "decided" that they had celiac, then eventually tired of it and started eating gluten, I take it that their symptoms weren't too bad. I don't have a celiac diagnosis and I won't ever go back to gluten. I've been gluten-free for 4 years and will remain so for life.  I had a TIA at age 27 due to chronic headaches from gluten.

My husband has a tongue in cheek saying that if I decide to get careless with my gluten-free diet, then better double my life insurance policy! LOL! For me it's a matter of avoiding deadly complications like stroke and living to see my kids grow up. 

Anybody that "couldn't stick with it" either didn't have a real diagnosis or didn't have very big health problems from gluten, IMO. 

Its possible she doesn't even have Celiac.  I have had people say that they had Celiac but not now.   When I ask for more details, it doesn't sound like they were ever actually diagnosed with Celiac.   A couple had a wheat allergy as a kid that they seem to have grown out of (hives, stuffy nose symptoms).  A couple decided they have Celiac and then got tired of it.  

 

These people make me mad because they add to the mis-information and keep people from taking us "real" Celiacs & NCGI seriously.

So frustrating! It seems like all the options out there for diagnosis are flawed. I hope that you find the answers that you're seeking. I am one who will always probably remain undiagnosed because I would not survive eating gluten for 2 months. My skin rash was clearly linked to gluten though.

Yes, I noted how only certain pizzas are guaranteed to be prepared using the procedures, so I refrained from ordering a California Veggie Pizza since it wasn't on the safe list. I just did a sausage, pepperoni, and mushroom option and asked them to remove the meat and cheese and add a bunch of extra mushrooms. I also got a grilled veggie salad and that was great!

I'm going to call them up and recommend that they add their veggie pizza to the gluten-free routine. 

I decided to try the California Pizza Kitchen and had a very pleasant experience there. They use procedures approved by the GIG group to prepare the gluten free pizzas. They have 4 pizzas made using those procedures and don't even allow wheat flour in their kitchen, so no airborne wheat. 

Overall, it was great. It's good to see a restaurant that is taking precautions not to cross contaminate the gluten-free food.

I was already vegetarian when I found out that I couldn't tolerate gluten. (had a TIA and was hospitalized just 10 days into a gluten trial, so no celiac testing for me!)

I also don't tolerate dairy well either. In addition, I avoid refined sugar as much as possible, due to a weak immune system.

I view gluten intolerance as a blessing, in a way, because I can't eat 99% of the highly processed meat substitutes. Instead, I eat lots of fruits, veggies, beans, whole grains, etc. I feel like being gluten free will probably extend my quality and quantity of life, because I can't eat a lot of the vegetarian substitute foods that aren't very healthy.

Are there any other vegetarians here? Care to share your favorite recipes or menu ideas?

Yeah, people don't really get the fact that I don't care if they eat gluten in front of me. I don't care to be "normal," I'll eat the food that gives me the best chance of living to see my kids grow up. LOL!
 

Yesterday, I went to a potluck. I set aside my gluten free food before the meal and set it on the table where I was going to sit. My friend explained to someone standing there that I suffered from gluten intolerance. I started to explain to the lady what gluten was. She said, "Oh I know all about it! I used to have celiac disease! I had it for about 5-6 years!" I said, "Ma'am, if you were ever diagnosed with celiac,that means that you still have it, celiac is a lifelong condition."

She then expounded on how she cheated on her gluten free diet weekly and eventually stopped having symptoms from gluten consumption. She went back to her doctor and asked him to retest her and see if she still had celiac disease. The doctor said, "Do your own testing and if the gluten doesn't bother you anymore, I don't see why you would have to avoid it."

I explained to her that there's such a thing as being an asymptomatic celiac and she still didn't believe me.

Ack! Just want to bang my head against a wall! Ignorance like this makes it all the harder for those of us who are trying our best to eat strictly gluten-free all the time.

I wonder if the doctor got his medical degree from a cracker jack box? 

Thanks for the feedback! I will read through that list.

Having a TIA at age 27 was pretty terrifying! Definitely not anything that I want a repeat of.

My doctor said though that that happened because I had a lot of gluten (i.e. 10 days worth.)

My thoughts though is that I don't know what level of gluten could cause a TIA in the future, so not worth taking a gamble on. 

I shared my story in another thread, I don't have an actual celiac diagnosis because my symptoms resolved when I went gluten-free and then I resumed eating gluten and had a TIA (ministroke) resulting from chronic and persistent headaches while on the gluten trial. My TIA occurred after a mere 10 days on the gluten trial. 

My husband told me that I wasn't ever allowed to trial gluten again and my doctor agreed that the gluten was the cause of the TIA. So off to GFland I went for good. That was 4 years ago and I committed to being gluten-free for life at that point, diagnosis or not. I figured that frankly, even if my celiac tests came back negative or inconclusive there's no way that I would eat gluten again. I'm too young to risk having a stroke!

What I want to know is what are the consequences of being sloppy with the gluten-free diet? It's my understanding that celiac or not, I have an increased risk of cancer and other complications if I eat gluten when I'm obviously severely intolerant to it. Is that correct?

The reason why I ask is that I get a little weary of people thinking that I'm extreme for going out of my way to prevent cross contamination and wanted some evidence to share with those who don't think that getting my gluten-free food contaminated is that big of a deal. 

Thanks for the help!

Can a regular dermatologist do this test? How much does it cost without insurance typically?

Why would they biopsy beside the rash and not on it?