New Here - Gi For Sure... Is Celiac Diagnosis Required?

[GirlScout]

Hello all! I'm new to the forum after lurking for many months. I've gotten some awesome information from this place, but I really need to find out if I really need or can be diagnosed. It's not like I want to be Celiac, but at least I would know, and my husband would know. First of all, he is very supportive. He knows I am GI because he's seen me thru self-diagnosis (I am also lactose intolerant thru self diagnosis). However, he thinks it is not that serious, and that when I have one of those "hmmm" moments where I read something that sounds just like what I'm going thru, his usual response is "that's not you, you're not that bad". It drives me crazy, because, well, obviously, how would he know? He's not a Dr, nor has any background in nutrition (I do). And he doesn't feel how I feel.

Here's is my background. Since I can remember, I have suffered from stomach pains, head aches, and canker sores, and eczema (on my scalp). As a child, I came home from school often due to my stomach pains and headaches. My Mom, and there is no blame there, just figured it was anxiety, stress, and family Dr agreed and paid no mind to it. It never got better, and headaches by 9yrs old turned to migraines (with aura). Stomach pains also continued, and it was like I had a constant cold (I have no allergies - tested). College was tough, and I used all my sick time with work. I then started getting sinus infections, lung infections, and (what they figured) was heat and exercise induced asthma, and anxiety attacks. I'm fit and active but constantly having aches, pains, and strains (I also had carpal tunnel syndrome in both my wrists - operation solved that). Other things were extreme fatigue & brain fog, iron & calcium deficiency, gas, bloating, diarrhea &/or constipation. Dr's always just said, eat right & exercise.... but I did, I ate whole grains (LOL), and low fat dairy (LOL), lean meats, fruits & veggies, just like I was taught. Never getting better, but always just living with it because I didn't know what else to do. BTW, no migraine meds worked for me, they were pretty much weekly.

It got worse after having children. One day I was in extreme pain, and I finally had enough. I went to emerg because I couldn't wait 2 wks for a Dr appt. They thought it was my gall bladder and sent me for u/s. My Dr said results showed it was fine, but they found a cyst on my liver... that sent me on my way for a bunch of useless tests for my liver (mri & catscans, and barium swallows bleh). Finally, Dr sent me to a specialist. The "Specialist" was no help. He said a couple things gave him concerns, and that was my cortisol levels were extremely low for a normal person. 2nd test still showed low, but on the very low end of normal, so I was normal. He then told me, that because I was pushing 40 yrs old, a SAHM, slightly overweight, that I should just get out and exercise and eat right. I wanted to tear his head off (but didn't), because I felt like he just called me a fat-old-mom. I just cried and said, I do, I exercise everyday, and also eat right. He then suggested that I might be gluten and/or lactose intolerant, and told me to go off of that for several weeks and see how I feel. I didn't at first, but then my Mom called me after watching a show on Celiac and Gluten Intolerance. She went to this website, called me and said "that's you". So I went gluten-free (and Dairy), and was feeling pretty good. Then after about 3wks, I ate a slice of pizza, thinking we'd see how it was. Well after about an hour, I was on the floor curled up in a little ball in extreme pain. This was followed by a migraine 2 days later, and feeling like crap for the next week. Well that was it for me. I stayed gluten-free, discovering hidden gluten, and what grains are actually gluten too (spelt, barley, amaranth, etc). Stomach pains, migraines and fatigue are now mostly my indicators that I've inadvertently eaten or cc gluten (few and far between). I haven't had to use my inhaler at all since I've gone gluten-free, and no more infections. I'm feeling better than I have in a long time.

I decided to go back to my family Dr because I thought I should get tested for Celiac, and I heard there was a blood test. I just wanted some peace of mind. He told me there is no way I could be Celiac because I was overweight (not by alot), and I didn't have diarrhea all the time. I tried to tell him about all the recent advances, but he just said fine, gave me a blood test, and was smug in his advising me that my count was too low to be considered Celiac. I had just read (after my test, before my results) that being gluten-free will produce a neg result (I've been gluten-free for over 1 yrs now almost 2yrs). He said it didn't matter, and to stop diagnosing myself. Everything I read is that it does matter, and that I need to be on a gluten diet for at least 3 mths. I just can't do that, or rather I will NOT do that.

So my questions are, if I am Celiac, and don't know it, but am gluten-free, do I really need a test? If I'm fine on a gluten-free diet should that be enough? It is for me, however I'm tired of this "oh, your not that bad" attitude about being GI, ie: hubby not thinking that "every crumb matters", and I don't know how to convince him if it really does. And are there any tests you can take that would make that determination without going on a gluten diet? I know there is a genetic test ($$) but how reliable is it really?

Thanks for listening (or rather reading). I know, it's long. Thanks again!

[GlutenFreeManna]

Hi and welcome! First of all after almost two years gluten free it sounds like you know the answer without any tests. Many of us are like that. I self-diagnosed and you could not pay me to go back on gluten for tests. You biggest problem will be convincing you husband that every crumb really does matter. It sounds like he is supportive, but in denial about it too. Is there anyway you can go back to the dr that recommended you try a gluten free diet? He might diagnose you just based on you response to diet (although it's rare to find a doctor that will do that it's not unheard of--a good doctor will tell you if you get sick when you have gluten then you need to avoid gluten). If you can't go back to that doctor, then find one recommended on the boards here as a celiac savvy doctor. Maybe contact your local support group if you have one and find out if there is a doctor in the area they recommend. At the very least maybe you can get a doctor to explain to your husband that even if you are gluten intolerant and not celiac you still need to be just as strict with the diet. In my humble opinion gluten intolerance and celiac and two names for the same illness at different stages or the same illness in different forms, attacking different systems of the body (take your pick, I believe they are related in some way). I don't think doctors know enough yet about the difference between the two, if there is a difference. But every doctor who is knowledgeable will tell you that you need to be just as strict no matter which one you have. So does it really matter what you choose to call yourself? Only you can decide if it's important to have an "official" diagnosis.

[Skylark]

Hi. I'm self-diagnosed too. My doctor at the time offered tests, but explained I'd have to eat a "normal" amount of wheat for at least a month. I ate one sandwich, got sick, and decided it wasn't worth it.

Right now, there is no real advantage to having the diagnosis, as there are no medicines on the market and the only treatment is a gluten-free diet. You need to be monitored for hypothyroidsim, osteoporosis, and nutritional deficiencies but that can be done without your eating gluten.

There is no diagnostic test available for people who have been gluten-free for a long time yet. Your Dr. is just plain wrong that the blood test would be positive after a year gluten-free. The genetic test only tells you the likelihood of celiac, and if you come up with low risk genes, it will not help matters with your husband.

As far as you personally watching every crumb, it's hard to say. What my doctors have told me is that if gluten makes me so sick that I am not willing to challenge and test, I should eat as if I'm celiac for safety. Over my years gluten-free I have gradually grown more sensitive, so now I have to avoid crumbs to feel well anyway.

[mommyto3]

Maybe you should have your husband read through a bunch of the posts on this message board. He could learn a lot and also see that 1) every crumb counts 2) just because you didn't get "the test" doesn't mean you're not Celiac. Good luck, I bet he'll come around with some education.

Just as an aside....I had terrible "gall-bladder pains" for 12 years before discovering that I'm Celiac. And I mean writhing on the floor for hours and feeling like you're dying type of pain. The last episode was so bad that I finally went to the hospital to get it checked it out. They did an ultrasound and said that I suffer from "gall bladder spasms" with no stones or damage, whatever the heck that means. I took it to mean that my gall-bladder is finicky and reacts to what I eat (at the time I didn't realize it was gluten!). Since I've gone gluten free these pains have disappeared and my terrible headaches and migraines have decreased significantly.

Diagnosis or not, you know your body so make sure you listen to it!!!

[GirlScout]

Thank you all. And you are all right. Personally I guess I don't need "that" test. I'm just having a really bad few days, and I just can't pinpoint it to where it came from. When I read that "every crumb counts", my hubby's response just hit the wrong nerve. I'm pretty sure it was the "gluten-free crust" pizza I ate, because even though the crust was gluten free (it was homemade by someone else), I'm pretty sure the sauce had gluten, or that they used the packaged shredded cheese.

I really wish I could get my husband to read these posts, but if it's not about boats, motorcycles or home theater, he's not interested in reading it. If I tell him about something I read in an article, blog or forum, his usual response is "I don't know..." as in "oh I don't know if I believe that". Infuriating, I know.

mommyto3, my pain is just the same, I'm doubled over in a cramping abdominal pain, it has me in tears, and I can't do much but ball up and wait for it to pass. But did the Dr do any tests on your gall bladder, and it's healthy otherwise? There will be times when I move the wrong way and I get a "charlie horse" in my ab muscles, and it's not because I need to strengthen them, but I think that has to do with mineral deficiency. I'm fine if I'm taking my supplements.

Thanks again everyone!

[GlutenFreeManna]

Thank you all. And you are all right. Personally I guess I don't need "that" test. I'm just having a really bad few days, and I just can't pinpoint it to where it came from. When I read that "every crumb counts", my hubby's response just hit the wrong nerve. I'm pretty sure it was the "gluten-free crust" pizza I ate, because even though the crust was gluten free (it was homemade by someone else), I'm pretty sure the sauce had gluten, or that they used the packaged shredded cheese.

I really wish I could get my husband to read these posts, but if it's not about boats, motorcycles or home theater, he's not interested in reading it. If I tell him about something I read in an article, blog or forum, his usual response is "I don't know..." as in "oh I don't know if I believe that". Infuriating, I know.

mommyto3, my pain is just the same, I'm doubled over in a cramping abdominal pain, it has me in tears, and I can't do much but ball up and wait for it to pass. But did the Dr do any tests on your gall bladder, and it's healthy otherwise? There will be times when I move the wrong way and I get a "charlie horse" in my ab muscles, and it's not because I need to strengthen them, but I think that has to do with mineral deficiency. I'm fine if I'm taking my supplements.

Thanks again everyone!

With pizza it could be something other than the ingredients. Did you cook it on a stone or a pan that you have used in the past for regular pizza? You could have picked up cross-contamination from previous pizzas you have made. Did you make a regular pizza the same day for your husband? If so, did you use any of the same utensils or did you touch the gluten pizza to take it out of the oven or cut it and then

pick up your pizza and eat it? Or the crust may have been cross contaminated when you got it if it didn't come from a gluten free only facility. There are so many variables to consider. I hope you feel better soon and I hope you can get your husband to take the danger of CC seriously.