Wednesday, June 17, 2009

Do I Have Celiac? Is That the Answer?

Some problems caused by celiac that, coincidentally, I have:
Sjogren's, arthritis, osteoporosis, antithyroid antibodies, ANA + (indicator of heading toward lupus or other autoimmune issues), psoriasis, menstrual irregularities, bad intestinal issues that I don't talk about a lot, the liver issues, neurological symptoms, brain fog and memory issues, anemia, menstrual issues, vitamin deficiencies that I should not have given my diet (magnesium), chronic fatigue, extreme hunger after I touch anything with wheat.

The first rheumatologist gave me the blood test for it five years ago, before I had any of these problems except the orthopedic ones, I guess to see if that caused my fragile bones. I thought celiac was something people had at birth or not and didn't realize people could get it at any time.

I kept getting sicker and sicker over the course of the last month or two. We brought our grocery budget for a family of 4 under $100 a week by shopping for what's on sale and planning menus around that. That also means buying cereal that's on sale and that we can use triple coupons on (50 cents for Raisin Bran) rather than Rice Chex or oatmeal cereals I often ate. We are eating healthy but almost all grains were from wheat.

I can't afford the copay on a biopsy; the blood test is often inaccurate. I am going completely gluten free. I can't know for sure whether I have celiac or just a complex of interrelated autoimmune symptoms. But, frankly, it seems irresponsible to not try a gluten free diet. Apparently people can get really, really ill from celiac and I do have symptoms that match up. It's worth a try and I'm glad to do what I can and excited that it may work.

When I eat as wheat free as possible, I feel better overall, with more energy--I feel smarter and that my brain will work. I was noticing that I still would feel bad after eating a rice cake, though--cross contamination, maybe, because of the flavorings on it.

The cost is a concern and is the main reason I had not tried gluten-free more before. Now WalMart now offers a gluten-free pasta for under $2.00 and Chex has a good cereal that is cinnamon flavor and far more tasty than Rice Chex. Corn chips and corn tortillas that aren't contaminated are good options. Too much corn will also me itchy, so I need to find some other options too. I found about Bob's Red Mill from Gluten Free Girl, so we can make some things far more cheaply ourselves. I can't afford a lot of the gluten free cereals, crackers, granola, etc. on a regular basis, but I'm sure I'll get some on occasion. It would be nice to have some convenience foods on occasion, though I don't normally think of bread or pizza dough as a convenience food!

Between my daughter's violin camp, my son's Scouting day camp, and trying to get some other things done I have not had a chance to go to the specialty stores yet, so I've had a lot of rice this week, sweet potatoes, and small baked potatoes--I need some carbs. We're out of quinoa! We need to get that too.

I don't have a lot of physical energy from pain so the idea of making my own breadcrumbs is daunting even though I used to love to concoct new recipes. I'm having a few food cravings but also enjoying some really good food--my husband made eggplant Parmesan this weekend. The eggplant is not breaded--it's baked with balsamic vinegar in the oven before layering it with cheese and homemade chunky tomato sauce (hardly a sauce because the tomato retains its texture). We've had a lot of free tomatoes this year from some of my parents' customers who sell at the Farmer's Market--tastes so good on grilled cheese sandwiches (have got to get the gluten free bread mix, not an option now) or chopped up and cooked with basil, Vidalia onion, a touch of sugar, a mix of Italian spices and a touch of white wine. Incredible flavor!

I only just now found out you can acquire it at any time, that it's not something you're only born with. I did wheat free for a while as much as I could and felt better but slid off; I'd been tested a long time ago and didn't have it then--before all of these other things. I got really sick the past few weeks from eating as we have but feel excited that there may be some pretty simple solution to most of it; I doubt it will cure the arthritis completely but it may help some.

Still not sure on the wheelchair cushion--I do have Katja's extra one. Goodness, my hip is hurting me all the time, and my sacrum and I'm wondering if I could sit up very much even in a wheelchair with a good cushion. I don't want to invest lots of time and energy and insurance money on something that won't work better.


Shelli said...

Diet is important if you are experiencing chronic fatigue symptoms, even if it isn't specifically Celiac. Have you tried an elimination diet? It would definitely help you identify what exactly is making you feel so bad. A good article on diet overall and a link to a good elimination diet is here:

FridaWrites said...

Hi, Shelli--I have done an elimination diet before but it's been a long time. I also notice oats make me feel weird but I can try the GF oats since a lot of brands do have a lot of wheat contamination. Thanks for the link!

yanub said...

Frida, if you think you may be sensitive to wheat products in any way, do not eat wheat products as little as possible. Do not ever eat them. Do not consider them food. When I first thought that wheat might be the root of my allergy problems, I only cut way back. I did not ferret out every source and eliminate it from my diet daily. The result was that there was no significant change because I was still constantly exposing myself. When I got serious about it, I got a lot better. My daughter, since starting the modified Atkins for seizures, has cut out wheat completely from her diet, too, and has come to the conclusion that wheat is one of the triggers for her seizures. She now says she will never eat wheat again, even if she goes off the seizure-control diet. That's how sure she is of the connection. She can eat some corn here and there, or a bit of potato or rice, and not have anything like the reaction she gets from wheat.

Oh, if you can tolerate beans, mung bean noodles are great and cheap.

FridaWrites said...

Oh, I agree! I tried cutting "most" before and it wasn't enough. So I am examining every preservative/ingredient with an eagle eye, looking them up on the gluten information sites. Mung bean noodles are a good idea I hadn't thought of. Wheat must just be really cheap for producers. Seems to be in everything, even spices.

One Sick Mother said...

Wow! Interesting question. You might be onto something here.

Celiac can seriously impede the body's ability to absorb many vitamins and nutrients, and we all know that nutrient deficiencies can cause all sorts of problems in the body.

I suppose, in absence of any serious testing, the only way to know if GF helps is to try it. At least it's not prescription.

I went GF a long time ago, when I was misdiagnosed with endometriosis and was desperate for some kind of relief from the pain I had (I read on a web site that GF helps some Endo sufferers). Going GF didn't help the pain, but I did feel a little less tired. Interestingly, I have since had the celiac biopsy and it was clear. Placebo effect?

Please let us know how you get on with this project. I am both curious and hopeful about it.

BTW if you DO have celiac, it can take a long time for the damage caused by it to heal, so digestion issues may clear up more quickly than absorption ones. from celiac

FridaWrites said...

Yeah, OSM, I'm expecting six months or so to feel very significantly better from it--a lot of nutrients apparently can't make it through the intestinal wall at all until it heals.

It is good that it's not a prescription and that there are so many alternative products these days, which I hope will continue to increase.

I think yanub's suggestion is wise, to not even consider it food. Tonight I was looking longingly at a snack kids and husband were eating--but it contains malodextrin (50-50 whether it's from corn or wheat). Malodextrin is in a lot!