Gluten-sensitivity: A Family Trait?

[JenniferH]

Brief overview:

With the anemia, headaches, pancreaitis, allergies/asthma, gerd, and gastritis/swelling we did decide to go gluten-free last week. I'm already feeling better. I didn’t start to feel sick again until after I ate dinner last night. And I cooked it myself! I had tilapia fish and rice. I played it safe because I knew I never have a problem with this meal. Okay, so what was different last night? Why did I swell up and have a hint of a headache? Butter. I NEVER add butter to my fish, I always use olive oil but I ran out so I used butter. Ok, can’t have butter....or at least until I find one without the wheat filler.

From my previous post:

It’s a slow process, but I think we’re on the right track. My husband isn’t surprised at all. He says I’ve been in denial. I can’t explain why I’ve fought this, maybe because it seems this year I’ve had to eliminate so many things from my diet: milk, meats, pastas, some breads… I eliminated salad because I got really sick. Why? Croutons. I stopped eating minestrone because just a cup started making me sick. Why? Pasta. My husband is quite smug right now, “I told you so.” He’s such a brat!

Anyway, I’m getting there and I’m getting stronger willed and optimistic. Who knows, it might not be the actual fats I have problems with it. It might be the gluten that has upset my system so much that it doesn’t matter what I eat, I become sick. Its like having the flu. Its not the food that’s making you sick, it’s the flu. Your stomach just can’t take it.

Facing your family and helping them face the facts:

Well, I’ve been putting off calling my mother and sister-in-law about me going on the gluten-free diet. My SIL probably wouldn’t have had any problems with it. She has Crohn’s Disease, so I’m sure she would have understood, but my mother (per my brother’s explanation) has become so numb with worry over her children she just doesn’t want to face things. Anyway, my youngest son is sick today and I’m fairly certain it’s from wheat intolerance. I know I’m not a doctor, but I spoke with the nurse and with his previous history of rashes/diarrhea/recent temperament she agrees that it must be a food allergy. Just last week he had a bad reaction to french toast (wheat).

So, it was time to call Mom. I think my light-hearted mood really helped our conversation. She asked me how I was doing and I had my opening, “I’m doing actually GREAT!” She asked what was different and I explained to her about the Gluten-free diet… she laughed and said, “I told you not to eat all that wheat bread.” She was being funny and I discussed with her about “inheriting allergies” and that she diagnosed herself with colitis. She doesn’t know for sure if her ongoing Montezuma’s revenge/food poisoning is from colitis or not. I explained to her the symptoms and she said, “I get that!” DUH!!! Anyhoo, she wondered about my niece and cousin because they have the same symptoms as my son and myself. I told her that they were next on my list to warn. I spoke with my SIL and she was blown away and she too thinks she should have my niece tested. Unfortunately, especially for kids it’s a serious procedure to have a biopsy. The only thing one can do safely is put them on the diet.

Wish us luck! I’m very optimistic right now. Questions I’ve had for so long are being answered and if what I’ve been through helps others, then that will be the reason this was all worth it.

Chin up, newbies! I'm only a week in and it is already looking better!

[CarlaB]

Good for you! I'm glad you're feeling so much better.

Many celiacs are intolerant to casein, the protein in dairy, which would make you sensitive to butter as well. Most celiacs have to avoid lactose for a time after diagnosis because the intestine is not able to digest it, often the lactose intolerance will go away, but if it's casein intolerance, it won't.

If you don't want to have the biopsies, you can look into Enterolab (www.enterolab.com) for testing. Many of us have gone there and I've yet to come by someone who was unhappy with their service. It's not the conventional way to be tested and many docs won't accept it for diagnosis, but many of those same docs will accept dietary response.

[eKatherine]

Ok, can’t have butter....or at least until I find one without the wheat filler.

Real butter doesn't contain wheat of any sort. You were probably reacting to dairy, which makes me swell up, too.

[JenniferH]

I didn't think of that. I just didn't want to use oil, so used the butter. After eating I swelled up horribly and started getting a headache (headaches I've noticed come when I've had wheat). Anyway, later I looked and it said "artificaial flavoring" so I figured that was it, but yes I can't digest fats, lactose, etc either. I don't know why I didn't consider the milk. I didn't use very much, but regardless I need to be more careful. Thanks for your help.

[JenniferH]

Good for you! I'm glad you're feeling so much better.

Many celiacs are intolerant to casein, the protein in dairy, which would make you sensitive to butter as well. Most celiacs have to avoid lactose for a time after diagnosis because the intestine is not able to digest it, often the lactose intolerance will go away, but if it's casein intolerance, it won't.

If you don't want to have the biopsies, you can look into Enterolab (www.enterolab.com) for testing. Many of us have gone there and I've yet to come by someone who was unhappy with their service. It's not the conventional way to be tested and many docs won't accept it for diagnosis, but many of those same docs will accept dietary response.

Thanks, I didn't consider lactose when I added butter. I never use butter (I guess there was a reason). Anyway, I spoke with my son's doctor today and He explained my situation much better than my GI. He said that I was probably lactose intolerant and iron defiencent as well. I said yes! He said I wouldn't be able to digest the fats because of the inflammation/damage in my small intestine. So even if I'm not truely lactose intolerant, I am and will be until my intestine heals.