New To The Board And Waiting

[tyki]

Well, I convinced my doctor that it was probably a good idea to run the Celiac Panel on me and my blood is on its way to the lab as of Monday, now the waiting begins.

Celiac Disease runs in my family, although until 2 weeks ago I didn't have a name for it. I can remember 30 years ago, hearing that "Grandma can't eat wheat, Grandma is bringing her special rolls with her, wow its hard to figure out something she can eat." Never heard why it was she couldn't eat wheat, just knew that my mother was frustrated with all the things she couldn't use to cook for my grandmother, and remember hearing aunts and uncles say they thought it was all in her head. Now my Grandmother is gone, and I'm in the midst of helping plan my parent's 50th wedding anniversary. Lo and behold, my dad's brother has listed "gluten-free" as a dietary restriction on his RSVP card. Since I'm helping with menu planning for the weekend, I turned to the web to learn what the heck gluten-free means. Wow.....gluten-free = can't eat wheat, just like Grandma, hmmm....let's look at this a little closer. I asked family members some questions and it seems my uncle was diagnosed because of DH.

You see, for the last 8 months, I've been bouncing between my family doc, a GI, and a OB/GYN to figure out what the heck is causing me to have severe diarrhea. The Gastro doc says "Colonoscopy came out just fine, must be your hormones, you're getting close to the change, or else its IBS, live with it."

The OB/GYN said, "Gastro doc should be fired for not taking a keener interest, yes hormones could influence it, but the Gastro doc should be all over a intestinal upset, shoving it off to the OB/GYN is like the OB/GYN saying let's call in a Neurosurgeon for your C-Section." In the meantime, the diarrhea continues and keeps me home from work a lot more than I'm happy with, but I can't be more than 10 feet from the bathroom.

Then about 3 months ago, the diarrhea seemed to clear up all on its own, gradually. When I put this together, with the recent stumble over family health history, and the Celiac websites....it all started to become clear. You see, about 3 months ago, my husband went on a drastic diet, and our pizza orders ceased, our trips to the fast food places stopped, and basically my consumption of wheat was cut drastically by accident. So then it was time to test the theory. I made a specific effort to have wheat of some sort with every meal for 5 days. Over that time, the diarrhea began to return and by the end of 5 days it was back in full explosive force.

So I took a printed copy of some Celiac web pages with me, and went off to the doctor's office with information and family history in hand. It didn't take long, and my family doc was pouring over the web page information and agreed that I should have the blood test done. He congratulated me, saying it is a very difficult diagnosis to make. Then he went to research what the code was for the Celiac Panel and my blood test was begun on its journey.

This is probably more than any of you wanted to read from a newbie, but I already feel like I'm on pins and needles or riding an emotional roller coaster. I'm just hoping to have the results back before the anniversary event in July. Because that weekend about 90% of my living relatives are all going to be gathered in one place.

Oops guess this should have been a reply, not a new thread. Can an administrator help and move this where it ought to be?

[khyricat]

its ok where it is.....

welcome!

I am still trying to get the docs to give me a positive diagnosis, but make sure you had gluten in your system BEFORE the bloodwork or it will come up negative or uncertain!

Good luck

[Guest jhmom]

Hi and welcome to the boards !!!!

WOW, you do have a long family history and your story sounded a lot like mine. I do hope you get some answers soon, just don't get discouraged if your blood work comes back negative. As you will read all over this message board you will see story after story of people going to multiple docs and going through all sorts of test only to all come back negative and to be told they have IBS. A lot of us here ordered a stool panel test from Open Original Shared Link . This test was designed by Dr. Fine which has Celiac too, it is more sensitive than blood and a more accurate way of testing. Or if you wanted to try the diet for a couple of months and if you saw an improvment (as you did before) I would say that you cannot tolerate gluten and that is a test in itself and "some" doctors will accept that as a diagnosis.

So you hang in there, you will get some answers soon! Take care and Good luck to you!

[lovegrov]

No matter what your official results you already have your answer -- you have celiac disease.

richard

[tyki]

I had not gone gluten free prior to the blood test. I had had a significant drop in the amount of gluten I was eating, because of cutting the fast food and pizza out of our routine for my husband's weight loss diet, which meant I was fixing more salads, veggie casseroles, and the like. There had not been a conscious effort to go gluten free, and in fact as I look at the ingredients in the meals I have been eating, wheat has continued to be listed as an ingredient in just about everything. What changed significantly was I stopped having pizza twice a week, hamburger buns, subs from Subway, and to keep sweets out of the house I wasn't making cookies and cakes (to help hubby resist temptation), so the wheat consumption dropped significantly without actually going gluten free.

Over that 3 months the diarrhea I had been experiencing gradually lessened and nearly disappeared, but I was a long ways from being gluten free. To test the theory about the diarrhea being caused by gluten, I started adding toast, doughnuts, sandwiches, or a slice of bread and butter, and some wheat pasta with each meal, thereby purposely raising the gluten content of my diet.

I agree, I think the blood test and the eventual endoscopy are formalities, I'm 99.9% sure I have celiac disease. That doesn't make it any easier to come to grips with this. I have had more emotional meltdowns in the last few days than I can remember for a very long time.

Hubby is being supportive and I love him dearly, but we're both feeling a bit lost about where to start. It's been recommended that I stay on gluten until we finish with the tests and start learning about the gluten-free diet. So hubby tried to help, and while we were at the grocery store, he picked up packages of our kitchen standards (for favorite family recipes) and read the ingredients. It was so depressing, the longer we were in the grocery store, the longer my list of "can't haves" grew and I went into meltdown by the time we left the store.

The next night, hubby decided we should start smaller, so he started going through what we have in the pantry, and my list of "can't have" went up even more. Then he talked about needing to get rid of the toaster, cuz we wouldn't be able to decon it from all the gluten-laden crumbs, and my favorite cutting board, and it piled higher. Then he added that he has decided that since there are just the 2 of us in the house, it makes sense that we will both go gluten free....and I fell apart again.

He tried to help with "it could be worse"....and I know it could be worse, but right now, it seems like the worst news I've faced. Right now I'm having trouble putting a positive spin on it. I've always been "the good cook" in our extended families, my mother-in-law loves that I have learned how to make all the family's traditional specialties (they all contain loads of wheat) instead of being afraid of the kitchen. Now I find myself, at 48, unsure of how to feed myself, and clueless on how to cook with these wheatless flours. It just seems like such a monumental task.

I know its an elephant, and the way to eat an elephant is one bite at a time. But I don't know where to take the first bite. And this emotional roller coaster isn't helping me to think clearly.

Hopefully, I can lean on the pros out there while I re-learn my way around the kitchen.

[celiac3270]

First off, you're not alone in getting emotional from Celiac....whenever I have cramping/vomiting symptoms I get REALLY emotional....you know, the: "why me?" feelings. During the school year, I was seeing a counselor there. We talked about celiac disease (he has no clue, but tried to help....). However, he is going to be my teacher next year for Advanced French, and it's difficult to talk about anxiety and emotional issues with a teacher....if he were just a counselor it'd be different, but I feel like I'm keeping my tongue in check when I talk to him....and the idea of seeing someone is to open up. Because of my anxiety and emotional issues, my doctor suggested I talk to someone over the summer....he realizes that you can't really talk to someone at school about issues so personal: he feels that school should be kept separate from something like this....anyway, the point of all this: I understand what you mean about being emotional (I am still really emotional whenever I try to tell anybody what I'm feeling....). In addition, I can understand how you'd be overwhelmed beginning the diet....it's just about taking all this one step at a time....after being blood-test diagnosed, I ate gluten for awhile since I had the endoscopy after.....this is a good chance for you to learn everything you can about the diet: seize this opportunity and it'll be so much easier when you officially start, however, stay on gluten until after the scope.

Second, that is terriffic that your husband is so supportive that he'll go on the diet with you. The hardest thing would be to be alone in this...you need people to lean on when you feel emotional or upset.....it's really nice to have someone with you who is helpful.......you're lucky for that.....my mom is that kind of person for me....she helps me find good products, helps me deal with symptoms, emotions, and the like. It makes me so much stronger having someone to support me the way she does.

Third, don't expect to find much in pantries or grocery stores...whatever's fresh (vegetables, fruits, meats), you can have, most sodas you can have, you can have a select few big-name cereals, and most FritoLays chips:

FritoLays Gluten-Free Products:

Last updated August 28, 2003

BAKED DORITOS

[tarnalberry]

tyki, by already being comfortable in the kitchen, you're a step ahead of the game. go to the produce department in your grocery store and look around... there's a lot of food there, and - aside from the package/processed stuff they try to push on you - you can have all of it. go to the meat counter and look around... there's a lot of food there, and - aside from the packaged/processed stuff they try to push on you - you can have all of it. (I'm assuming you go to a grocer that doesn't adulterate the food... that sort of thing really ticks me off, as has since well before I was gluten-free.) and the aisles with the rice and beans - all good, again - aside from the packaged/processed stuff they try to push on you.

see a trend in my paragraph?! ;-) it's the packaged/processed crap (and yeah, I know, I'm a food snob here... I can't help it! it's in my veins! ;-) ) that can get you, but all the rest of the natural foods - the same stuff from which you can make your own (better tasting) version of the packaged stuff.

as for the baking, remember that it took you time - at some point - to get the hang of baking in a wheat filled kitchen; it'll take the time to get the hang of baking in a gluten-free kitchen. while I don't bother with yeast breads very much (time wise, I'm too lazy for them), quick breads and muffins - once you get the idea of the chemistry behind it all - really haven't been a problem for me.

there are going to be things you can't have, can't find a great substitution for, or won't want to deal with the extra hassle of making. but because of that, you have an opportunity to find new things you can't have, that you wouldn't have tried any other way, that no one else knows about.

[tyki]

Well, its been two weeks, almost to the day. I had a voice mail from the docs office yesterday and I called in this morning. The blood test results are back and they were negative.

Well, now that was 2 weeks of waiting to be no further along. Of course from reading things on the web, I understand that really all that tells me is that there wasn't serious damage to the intestines at this time.

Now its time to decide if I go ahead with the Enterolab test, or just go undiagnosed and dive into being gluten-free.

I did venture into some gluten-free baking the other night. Made up a batch of cornbread muffins with the Gluten Free Pantry Cornbread Mix. They came out pretty good.

[flagbabyds]

I would go gluten-free and if you don't get any better that is when you start to worry.

[CarolynM]

Waiting on biopsy results for my daughter -- thinking we will end up trying gluten-free diet regardless because I see such a correlation between diarrhea and increased wheat-pasta, pizza,pancakes in her diet.

Initially, I was told to go gluten-free immediately prior to the biopsy so I did some research and experimenting as you have.

If you are going gluten-free, get the CSA Gluten Free Product Listing. Visit their website www.csaceliacs.org Celiac Sprue Association. The book will help take some of the work out of determining mainstream products that are gluten-free. Also, it gives a flour mix that can be substituted. I used the ratio given of Rice flour, potato starch, corn starch and soy flour for flour in a traditional scratch recipe for corn bread. If we go gluten-free, I will probably mix it up in bulk, then be able to scoop out a cup of baking mix.

Quick and good but expensive - Bob's Red Mill gluten-free Brownie Mix and I found it in my regular grocery.

Good Luck.

[burdee]

Hi Tyki: Here's an idea to help you decide whether to go gluten-free ASAP or wait while you do Enterolab tests: DO BOTH. You don't have to be gluten-free to have Enterolab tests show gluten antibodies, the celiac gene, malabsorption tissue damage. I'm not sure whether you've considered milk sensitivity (many celiacs have lactose intolerance and/or casein sensititivity), but even while using 'lactaid' to consume dairy, E-Lab tests will STILL show casein sensitivity.

I had been gluten-free for 8 weeks and using lactaid supplements for 10 years (and also using digestive enzymes and probiotics for over a year) when I did E-lab tests. They STILL showed gluten and casein antibodies, celiac gene, but no malabsorption. Dr. Fine said "Enzymes can keep malabsorption away, if you lack pancreatic enzymes" when I mentioned taking digestive enzymes before the test (AFTER receiving my results ). I kinda' wish I would have known before doing the test, but it really makes no difference. I STILL must avoid gluten and casein.

I assume you started the whole celiac disease testing process, because you had diarrhea symptoms. Then you discovered going gluten-free helped resolve that symptom. I can understand your desire to receive a definitive test result of celiac disease, so you don't have to wonder if something else may have caused your diarrhea. However, whether or not you decide to follow the gluten-free approach to resolve your symptoms or you wait for a doctor/lab to indicate you have celiac disease, the treatment is the same: GO gluten-free ASAP.

My initial celiac symptoms were so excruciatingly painful, I was desperate to do anything to just stop that pain. I realized my own doc had led me astray (for 8 years) with her 'IBS' diagnosis which hurt (with recommendations to eat more wheat bran and whole wheat products) rather than helped me. So I initially didn't care about 'diagnosis'--I just wanted to stop that terrrible pain. When going gluten-free reduced the painful symptoms, I could think more clearly and wanted to at least talk to a doctor. So I saw a naturopath, but he discounted the value of the tests saying the blood test only works (true positive results) when celiac disease is so far gone that gluten antibodies leak from the gut into the blood and the biopsies only work when the biopsy sample actually got a damaged section of the intestines which have to be pretty far gone to have flattened villi EVERYWHERE. He just told me to just keep following the gluten-free diet and then look out for other possible allergens.

However, everytime I 'slipped' and got recurrent painful symptoms, I wondered if I might have something else (instead of celiac disease). Those fears made me request Enterolab tests. After taking the complete test panel (with free milk sensitivity test thrown in) and sending off my specimums, my recurring symptoms (despite being 8 weeks gluten-free) made me wonder if I really did have milk sensitivity (even though I had used 'lactaid' a long time). I didn't realize I could also have caseine sensitivity when I started using lactaid. So I tried my own little milk sensitivity test by going dairy free 36 hours and then having 1/4 c of milk. My dramatic reaction (and symtoms which continued for over 4 days) convinced me I was also casein sensitive. When my E-lab results (gluten & casein antibodies, etc.) arrived a few days later, I was relieved, but not surprised. Now my symptoms are almost nonexistent and I'm feeling better every day.

So I would recommend you go gluten-free ASAP and send for E-lab tests (if you can afford them) immediately after that. Sorry this was so long, but I was trying to tell how I decided to use E-lab AND go gluten-free ASAP.

BURDEE