Darn this Celiac!

[tavalon]

I've been so, so very good these last 11 years since I was diagnosed with Celiac Sprue, but I've had accidents, mostly accidental contamination that people who don't know better unknowingly poison me with. I've become wary of homemade food unless I know the person understands gluten intolerance or can list every single ingredient in the item. I'm "blessed" because I have a reaction within about 2-4 hours which consists of joint pain, the kind I suspect those with Rheumatoid arthritis are probably very familiar - throbbing, aching and sometimes even spasms. Yuck.

Anyway, a few months ago, we decided to start letting my son (there's a whole other story about how I accidentally found out I had Celiac) have some gluten. In about 4 months, we will have him tested and decide if this is going to be okay. He has autism and the gluten/casein free diet was a wonderful thing for him through his childhood but now, the gluten doesn't seem to be impacting him negatively.

Finally, the rant. Today, we stopped at McDonald's (his fav) for french fries and chicken mcnuggets. He tends to ignore the protein in favor of the carbs so I pulled the box out of the bag to remind him to eat the chicken. That's all I did. Tonight, I'm hurting like I had a full on gluten accident. I know I didn't, so it must have been touching the box. Geez, after 11 years, I'm getting so hypersensitive I can't even be around gluten. That feels really unfair. And a little nerve wracking.

[tavalon]

1. So, after writing this rant, another explanation occurred to me

My kiddos new apartment has been giving both of us allergy fits, so I took a couple of allergy pills. The pain is gone. Now, I don't know if the allergy pills counteracted the gluten or if this asthma inducing new place is the culprit. But there it is.

[womanofthehills]

3. Fresh paint, leather furniture, certain cleaners and pesticide

give me severe allergy symptoms - close up my throat. If I smell something, I'm out of there. If it's bothering both of you, it might not be healthy for your kiddo.

[tavalon]

4. I know

I'm going to bring my air purifier over tomorrow and next Friday, I'm going to get him out of there while we get it professionally steam cleaned. It looked clean moving in, but the crap we're getting out of the carpet, yuck.

[hedgehog]

2. It's a shame so many people are self-diagnosing with gluten intolerance,

it must make it harder for people with a real problem to get any respect! From what I've read, people with gluten intolerance react the same way as people with a severe allergy to poison ivy - they keep reacting well after the offending stimulus is removed. Here's hoping that you don't run into any more problems!

[tavalon]

5. I've become hyper sensitive to gluten

I won't even go near the bread aisle at the store. It sure keeps me honest.

[tavalon]

6. Actually, Celiac has been called a great pretender

In America, it takes an average of 12 years to finally reach a diagnosis because it's the last thing the doctors think of and many of the symptoms appear to have nothing to do with the disease - infertility, chronic anemia, brittle bones, low thyroid, eye problems, just the gamut of strange symptoms with only a few presenting with gut related things.

In Europe, OTOH, people are diagnosed much more frequently and quickly, because it's one of the first things the doctors over there rule out.

Because of that, it was thought that Celiac was much more prevalent in Europe than in America. But the Framingham study put an end to that myth. They blood tested a large cohort and the prevalence is the same, it's the diagnosis rate that is so different. So, one in about every one hundred people has true Celiac. But it is on a spectrum and many people are mildly intolerant without having the full on disease and some babies are diagnosed because they have failure to thrive. That's fulminate disease and the babies can actually die if not diagnosed, can and unfortunately, have.

I would never have been diagnosed had it not been for my son. We decided when he was six to try him on a gluten/casein free diet. We always had a rule that we wouldn't try any treatment on him before trying it out ourselves. So, I volunteered. I felt just awful, like what I imagine an addict would feel like coming off of a drug. So, after my six weeks, I went back on gluten and felt much, much worse. So, three months later, I went to a GI doctor and said I wanted to be tested for Celiac. He rolled his eyes but we did it. Both ends, you know? And he said after, that he couldn't understand why I had never been diagnosed, my upper GI villi were flat. I had severe disease with all the symptoms I mentioned above, but no one ever thought, including me, to assess for Celiac. So, now, while I'm super sensitive to gluten, I actually feel healthier than I did when I was 20

I am a strong advocate of not self diagnosing and I'm seeing an awful lot of that. But then, those people are swearing they feel better and they may well be on the spectrum.

I'm actually kind of happy that Gluten Free seems to be all the rage now because it makes my choices so much more. 12 years ago, it wasn't like this at all.

Edited to add: My son is actually my step son. I was never able to carry a pregnancy with ten miscarriages.