Newbie With Questions

[Duhlina]

I'm 43 and for my ENTIRE adult life I have been going from doctor to doctor with the same complaint. I'm ALWAYS exhausted. ALWAYS. Of course, no one found anything wrong and a few even told me it was depression and "here, take this". Well, a month or two ago I was tired of being tired and feeling like crap so I googled some symptoms and celiac came up. I was even starting to think I had a tumor or something in my stomach that was making me so bloated! I had an appointment with my doctor the next week and insisted I be tested for it. Gee, guess what? Results came back positive! FINALLY!

I have been gluten-free for 8 days now and I can already see/feel a huge improvement. I no longer look like I'm 7 months pregnant! YEAH! I'm still tired, but from what I've read this will improve with time.

I feel like a veil has been lifted. This diagnosis explains SOOOOO much.....right back to 8th grade when I had eczema so bad I couldn't go to school. It explains my migraines, sinusitis, eczema, allergies, depression, fatigue, etc., etc., etc. It just makes me SO mad that it took ME doing the research and INSISTING on the blood test for my diagnosis.

I have an appointment with the gastro next week. I'm not sure if they will want to do a scope and a biopsy or not or if the blood test is enough?

My question is....are there varying degrees to celiac? I've read some people have to go to extremes like throwing out their old wooden spoons or dishes. I'm hoping I'm not an 'extreme' case.

I've also read that there is a gluten detox period. I guess that might explain this rash I've developed on my hands/arms and legs?

I'm really going to miss some of my favorite foods, but if it means feeling better buh-bye. I tried gluten-free beer last night and wasn't terribly impressed.

I am SO glad to finally be diagnosed and very happy to have found this group!

[JoshB]

Yes there are varying degrees of both illness and sensitivity. Some people have all the classic symptoms and a half dozen of the weird ones. Some people only find out on accident and never realized they were having any stomach issues at all.

The only study I've ever seen on sensitivity found that people started reacting at somewhere between ten and fifty milli-grams of gluten. I personally have never noticed extreme reactions from cross-contamination. I try to eat out with friends and family, and yes -- mistakes happen. Hard to say if they happen too much, but I'm getting my antibodies tested every six months, and I figure that if I can keep them in the "normal" range that I'm doing pretty well.

There can be a gluten detox period. Gluten gets metabolized into several opiate like proteins, and if your body reacts to them as opiates then you'll be used to this, and may feel pretty badly for a few weeks while you readjust. I don't think that this would explain your rash, unless maybe stress was what really caused it.

[Gluten Free Traveller]

That's great to hear you have finally discovered what was causing all your symptoms! It takes away a lot of stress when you finally realise what's wrong.

I don't think you can be officially diagnosed as celiac without the biopsy. They need to see that damage is being done to your villi in order to confirm celiac disease rather than gluten intolerance. Unfortunately you will need to continue eating gluten for the biopsy to return correct results but personally I think it's worth it to know for sure what you're dealing with.

Personally I just gave our kitchen and all our dishes/utensils etc a really good scrub when I was diagnosed. We bought a new cutting board though.

There are better gluten free beers out there too..keep looking!

[Roda]

Some doctors will diagnose celiac on bloodwork alone. However if you do want to have the scope/biopsy you need to keep eating gluten until it is over.

I would recommend you replace your toaster and pasta strainer or buy a separate one for gluten free if keeping a shared kitchen. Replace wooden cutting boards and wooden spoons. You won't be able to get them clean enough. Replace any scratched teflon/non stick cookware since gluten can get stuck in the scratches. If you have stainless steel cookware it should be alright after a good scrubbing as should any glass baking/cookware.

Things I replaced or bought another: cutting boards, wooden spoons, scratched plastic utensils, pasta strainer, toaster, wafle iron, baking stone, crock pot (was old and non stick coating was very scratched), pancake griddle, non glass bakeware as mine was older/hand me downs and had alot of baked on residue, spices/herbs and other baking items that had possible cross contamination, condiments(let others finish them up and bought new to share), removed all flour from the house and only would bake gluten free.

I do have a shared house as my husband still eats bread and a few other items. He has a dedicated area just for his stuff. For the items we share he either scoops/squeezes out what he wants or places what he wants (like cheese/lunch meat) on a paper towel first so he does not cross contaminate. Now that I have three of us gluten free in the house there is very little gluten left. All our meals are prepared so everyone can eat. I also don't let anyone have free reign in my kitchen except us. My kids need to feel what they get is safe for them in their own house.

[AVR1962]

You said you were gluten free for 8 days and they had a scope to do yet? Stay on the glutens until all your testing is done. This was my mistake. The biopsy of the intestines is the best test but you need to still be on glutens.

I too had symptoms, looking back. Docs did the same s they did with you....said it was stress, gave this and that and sent me on my way. I did did a liver cleansing in Nov and that revieled all my issues but of course did not know what was going on, just knew I was very sick.

For me, I could at first (seemingly) have a 1/2 of a tortilla or a handful of pretzels and I thought I was fine. As I have stayed off I realize I either have become more sensative or I have become more intune to my body. I have not thrown out utensils but I do extras to prevent like wax paper on the butch block if I am making my own batch of gluten free tortillas. Liners in the muffin pan, etc.

I am 48 so I understand how this changes your world overnight but the good thing is you have a solid place to move forward from. Things will get better. The support here is wonderful! I have learned so much more thru this group.

[Duhlina]

You said you were gluten free for 8 days and they had a scope to do yet? Stay on the glutens until all your testing is done. This was my mistake. The biopsy of the intestines is the best test but you need to still be on glutens.

From what I've read though the treatment is the same whether I have the scope or I tested positive for celiac through the blood test so I'm not sure if they are going to require the scope or not. I'm not ingesting gluten until I talk to the gastro, which will be next week.

I've also been reading about the tax deduction for food for people with celiac. Has anyone done this? It seems like a lot of work, but it might be worth it!

[ravenwoodglass]

From what I've read though the treatment is the same whether I have the scope or I tested positive for celiac through the blood test so I'm not sure if they are going to require the scope or not. I'm not ingesting gluten until I talk to the gastro, which will be next week.

I've also been reading about the tax deduction for food for people with celiac. Has anyone done this? It seems like a lot of work, but it might be worth it!

If you are going to have a scope you really do need to get back on gluten until that is done. If you had positive blood work and you recover on the diet that may be enough for the doctor to give you an 'offical' diagnosis. If you are celiac you do need to let all your first degree relatives know that they should also be tested even if they don't seem to have symptoms as celiac can effect much more than just the gut.

As for the tax deduction it really to me is not worth the effort. First you need to be someone who itemizes. Then you need to keep every reciept and record the price of the wheat versions of stuff like bread and crackers etc. and what you can deduct is the difference between them. Then the deduction is considered a medical deduction so you can only deduct the amount over a certain percentage of your income. Since many of us don't have as many doctors visits, tests etc after we are diagnosed you may end up going through all that hassle for nothing and it also may red flag you for an audit.

[Bubba's Mom]

I think the paperwork for taxes would be a nightmare, but if you have a FLEX account(money set aside for medical with no tax paid on it)you can use your card for purchasing gluten free versions of foods. Just have your Dr write a note saying the diet is medically neccesary.

[Elaine1121]

Greetings all. I am newly diagnosed. The diagnosis was actually found accidentally. I was referred to a GI specialist who routinely does blood tests for Celiac. My GI doc told me that the blood tests were not suggestive of Celiac but highly positive. I had my endoscopy with 7 biopsies and colonoscopy with 4 additional biopsies yesterday. My doc had pics ready for me after I was out of the recovery room. She reviewed the endoscopy pictures with me and they all showed Celiac. As soon as we get the pathology back, she will send me to the nutritionist. I plan on starting the gluten free diet on Monday. Yes, I'm giving myself the weekend to prepare. I feel confused about what to eat and what not to eat...should I just eat fruit and meat and not be bothered with anything else? I have a lot of learning to do. I am grateful that I finally have a diagnosis

[AVR1962]

Greetings all. I am newly diagnosed. The diagnosis was actually found accidentally. I was referred to a GI specialist who routinely does blood tests for Celiac. My GI doc told me that the blood tests were not suggestive of Celiac but highly positive. I had my endoscopy with 7 biopsies and colonoscopy with 4 additional biopsies yesterday. My doc had pics ready for me after I was out of the recovery room. She reviewed the endoscopy pictures with me and they all showed Celiac. As soon as we get the pathology back, she will send me to the nutritionist. I plan on starting the gluten free diet on Monday. Yes, I'm giving myself the weekend to prepare. I feel confused about what to eat and what not to eat...should I just eat fruit and meat and not be bothered with anything else? I have a lot of learning to do. I am grateful that I finally have a diagnosis