BlessedMommy

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?

Thanks for the encouragement and comments, everyone! One thing that I do have on my side is that my doctor agrees that I'm intolerant to gluten, so at least I can tell me that my doctor recommends that I stay away from it! LOL!

Do you have to be eating gluten to get a DH biopsy?

I do get a minor rash when exposed to low levels of gluten. 

Hi, I've been registered to this forum for awhile but haven't really posted.

I wanted to share my story and find out if there were other people in the same boat. When I was pregnant with my first daughter, I got a really horrific skin rash. It left me in pain and itching almost continuously. Nobody could tell me where it came from. I went to the dermatologist and he prescribed me category C steroids. Those helped clear the rash to some degree, but it can back instantly. I did bloodwork and nothing came back abnormal. I really, really wish that somebody would've ran a celiac blood panel!

After my daughter was born, the rash cleared to some degree, but I was still miserable. My skin on my hands was badly broken out, my face was puffy and had dark circles, I had trouble losing the pregnancy weight and I struggled with postpartum depression. I tried a number of natural things, including a raw foods diet and my problems seemed to clear to some degree. When my daughter was 21 months old, I got pregnant with my son. This time I was determined to have a better pregnancy, so I decided to try an elimination diet. 

I felt great without the wheat, but within 3-4 days of reintroducing it, the same identical rash from my first pregnancy started coming back. It even started developing in the same spot! I quit the wheat and it immediately cleared up. I did a very low wheat diet for the rest of the pregnancy and things went relatively smoothly for the rest of the pregnancy. 

When my son was a few months old, I decided to try being all the way gluten-free and eventually I went to a naturopath who tested me and said that I was intolerant to all gluten and not just wheat. So I tried gluten-free for a few months (though I wasn't super careful about cross contamination) and then I realized that I could have celiac disease. I went back to my naturopath and she said that according to her test, I was celiac, but in order to get a full formal medical diagnosis, I needed to go back on wheat and get blood tests.

I started the gluten challenge and it was a disaster. I looked like I had gotten punched in the face. Puffiness, dark circles, fatigue, and eventually migraine headaches. On day 10 of the gluten challenge,  I had a TIA (transient ischemic attack or mini stroke) and went to the emergency room. I had numbness on my right side and speech difficulties.The hospital performed a CT scan and found no brain abnormalities. I went back to my regular doctor and asked if he wanted to run any more tests. He said, "No, just stay away from gluten." The day of my hospitalization was the last day that I have ever intentionally eaten gluten. That was February 13, 2010. From that day forward, I made the commitment that I would be gluten-free. As soon as I quit the gluten, the headaches started to go away. In a few days, I felt totally normal. To this day, 4 years later, I have never had any recurrence of those frightening symptoms, though on occasion, I've had an itchy rash or a flaming bright red face that indicated I probably got some trace level of gluten unintentionally.

I would love to have a "real" diagnosis, but unfortunately, with those types of symptoms on a 10 day gluten challenge, I would probably not survive a 3 month gluten challenge and I'm uninsured, so I don't have the money for a biopsy. My husband and I agreed that intentionally placing myself in harm's way to prove something that we basically already know is kind of pointless. 

Most of the time I'm okay with not having a formal diagnosis, but the other night it kind of grated on me. I went to a potluck and I made sure to bring a safe item that I could have. Someone placed my soup ladle on a piece of aluminum foil that was used to cover a loaf made with bread crumbs and then redipped the ladle in the soup. I refused to eat my own soup! I think that people thought that I was making a bigger deal out of things than necessary and sometimes I wonder if a diagnosis of celiac disease would make people take me more seriously. Then again, lots of people don't understand the gravity of celiac disease either, so it might not!

I look forward to posting around here more!