Is It Possible For Me To Have Celiac?

[Roguey]

I have lurked around these forums for quite awhile, but I just now got up the courage to ask you guys about my own wierd story to see what others think.

I have always been overweight, especially when I was younger. I "developed" early (C-cup by age 11), but I did not begin menstruating until age 17. At age 19 I stopped menstruating. I went to the gynechologist, who tested me for polycistic ovarian syndrome and a thyroid problem, then told me that I was fine and we just needed to force me to have a period. I was put on hormones for two years before I stopped taking them at 23.

When I was 21, I had my gallbladder out. The doctor estimated that it began to cause problems for me around age 15. I had terrible chest pains at that time, but my mother said it was just acid reflux and that I should stop crying about it, but zantac and tagament never worked.

I am now 26. I have been plagued by chronic fatigue most of my life, and I've always had bouts of constipation and diarrhea. I always have one or the other. I can't remember the last time I had a normal digestive experience. That has been at least since I had my gallbladder out at 21. I can't remember if I had problems before that.

Anyway... Around New Years, I got fed up with being constipated for weeks at a time and surviving off milk of magnesia. I had already tried several diets to increase my overall feeling of health including a year of vegetarianism and a year of veganism. Earlier this year I was reading about gluten intolerance, and I saw on these forums someone else who had similar symptoms (inability to lose weight, chronic constipation, loss of menstruation). I decided to cut out gluten around the first of the year. I hate being someone who diagnoses themselves on the internet, so I didn't really mention it to anyone except my fiancee... until I had my first natural period in 7 years back in April. I thought I was going to die. I hadn't had a period that wasn't planned by pill since I was 19! I began saying I thought I had a gluten issue, but I was really convinced when I had another natural period around mid-July. Since March I have been more regular - having bowel movements at least every other day. I have not gone a week without a bowel movement since February! I have a lot more energy, and I'm no longer hungry all the time. I don't get as bloated or gassy, and I've actually lost weight.

I want to get tested officially to be sure, but I don't know when I will have the money (I don't have insurance). I guess I am wondering if I'm just crazy in thinking that I have a gluten issue. I mean, it seems to me that the results of my elimination diet are strong evidence that I do have a gluten issue, but I'm still nervous to tell people that since my symptoms are almost completely opposite those most cited. What do you guys think? I am really interested in your opinions on my situation. Thank you!!!

[ravenwoodglass]

It sounds like your body has already given you the answer. There are quite a few of us here that are self diagnosed. I wish I had know about gluten as it would have saved me years of pain due to false negatives.

The most vital thing you need to ask yourself is how much pain are you willing to go through to get a doctor derived diagnosis? You have now been gluten free and to have any chance at a diagnosis you would need to go back on a full gluten diet eating at least 4 slices of wheat bread a day for 2 to 3 months. Even then you may still have a false negative. If you have done a 'gluten challenge' either through purposely or accidentally injesting gluten and have seen your symptoms reappear only you can decide if you want to go through the discomfort of making yourself ill again for the purpose of testing that may still show a false negative.

If you have a good doctor that has been seeing you for a while some will diagnose based on the remission of symptoms gluten free and becoming ill when then injesting gluten.

[Skylark]

I want to get tested officially to be sure, but I don't know when I will have the money (I don't have insurance). I guess I am wondering if I'm just crazy in thinking that I have a gluten issue. I mean, it seems to me that the results of my elimination diet are strong evidence that I do have a gluten issue, but I'm still nervous to tell people that since my symptoms are almost completely opposite those most cited. What do you guys think? I am really interested in your opinions on my situation. Thank you!!!

You have your answer, clear as day. Your body does not like gluten... at all! Stick around here and you'll see an amazing variety of symptoms of gluten intolerance and yours are not as unusual as you think.

I was never formally diagnosed. I did an elimination diet and had no clue I'd turn up gluten as the problem. I'd been gluten free for a while when I saw a doctor and opted not to poison myself for a piece of paper telling me what I already knew.

As far as friends, "gluten makes me sick" is all you need to say. If a friend asks if I'm celiac I answer honestly that I was never formally tested because I'd have to make myself sick with gluten for at least a month to do so. Lately I've just been saying I'm celiac as I finally figured out that the ultra-itchy blisters that used to come up on my hand and haven't troubled me for a couple years now were probably dermatitis herpetiformis.

[Tidings]

I was never formally diagnosed. I did an elimination diet and had no clue I'd turn up gluten as the problem. I'd been gluten free for a while when I saw a doctor and opted not to poison myself for a piece of paper telling me what I already knew.

As far as friends, "gluten makes me sick" is all you need to say. If a friend asks if I'm celiac I answer honestly that I was never formally tested because I'd have to make myself sick with gluten for at least a month to do so. Lately I've just been saying I'm celiac as I finally figured out that the ultra-itchy blisters that used to come up on my hand and haven't troubled me for a couple years now were probably dermatitis herpetiformis.

Hi Skylark,

Am curious about your itchy blisters on your hand. Could you please describe them further? Were they on your hands (back or front) or more on your fingers? Did they take the form of small blisters that were fluid-filled? Did they eventually break, dry up, and go away? Am really wondering about the details of the DH that plagues some folks with Celiac. As a child and teen, I used to get the above-described "blisters" in between my fingers. They ITCHED like crazy! They started out as red itchy "bumps" that soon developed into the fluid-filled blisters described above; I would scratch the heck out of them, of course, and eventually they'd break, drain, dry up and go away. It seemed like they returned whenever I was unduly stressed, so I always figured they were stress-induced. Never ever considered they might be related to some kind of food sensitivity.

While we're on the topic of remembering ailments from childhood that might've been related to celiac or gluten-intolerance, as a child in elementary school I was often sent home with SEVERE nosebleeds. Wondering if other participants here experienced a similar problem with nosebleeds as a child? (Eventually this problem cleared up, after I began to receive daily doses of Cod Liver Oil in Orange Juice! Am now wondering if the nosebleeds could have been a symptom of a "malabsorption problem" caused by Celiac disease?)

Thanks to all who share their insights and experiences!

[Natalya]

Your story is so similar to mine! I think you have both Hashimoto (thyroid) and celiac. OFTEN, THESE TWO COME TOGETHER UNDER THE AUTOIMMUNE UMBRELLA. As I mentioned in my "About Me," ONCE YOU HAVE ONE AUTOIMMUNE DESEACE, YOU'RE VERY LIKELY TO DEVELOP ANOTHER!!!

I suggest you check your thyroid ANTIBODIES as soon as possible. Screw the "complete" T-4 and TSH tests, as they show nothing. Same as with celiac, tests only show abnormal results when thyroid gland has been significantly damaged and is unable to function. If the antibodies are increased, but other thyroid counts are within the range, still insist to be put on Synthroid (thyroid hormone) - the minimal amount (25mg). Say you just want to try it and see how you feel.

I can't describe how happy I am to have gotten my life back after tons of symptoms similar to your have been gone. Especially the chronic fatigue, which was killing me the most. The very same day I started Synthroid, it was miraculously gone!!! The problem is few doctors are willing to prescribe thyroid medication to patients with similar symptoms. I literally burst into tears in doctor's office when I was told once again my test was OK. I was lucky though to have seen an understanding doctor who agreed to try Synthroid.

Soon after I started Synthroid, I went on elimination diet, and the rest of the symptoms were gone. I still happen to eat gluten now and then because I'm still new to this, after which I immediately get sick for days.

So yes, I agree with the other posts: you ARE celiac. Only 3% of celiac patients get officially diagnosed, after all. On top of that, I also think there

[Skylark]

Hi Skylark,

Am curious about your itchy blisters on your hand. Could you please describe them further? Were they on your hands (back or front) or more on your fingers? Did they take the form of small blisters that were fluid-filled? Did they eventually break, dry up, and go away? Am really wondering about the details of the DH that plagues some folks with Celiac. As a child and teen, I used to get the above-described "blisters" in between my fingers. They ITCHED like crazy! They started out as red itchy "bumps" that soon developed into the fluid-filled blisters described above; I would scratch the heck out of them, of course, and eventually they'd break, drain, dry up and go away. It seemed like they returned whenever I was unduly stressed, so I always figured they were stress-induced. Never ever considered they might be related to some kind of food sensitivity.

For me, they come up on my index finger, either at the base or somewhere along the side of it. I have a friend with herpes whitlow, where herpes virus gets into the nerves on your hand and he looked at my rash and told me that was probably what I had. It never made sense to me because I don't have cold sores or other herpes infections, and I'm not a dentist or someone who is exposed to herpes on other people.

I get a couple days of intense, scratch your skin off itching, and then a few little painful/itchy fluid filled blisters that eventually break and go away if I can manage to leave them alone. Like you, I have a stress link.

Supposedly the only way to tell a small DH outbreak from herpes is a biopsy. I started thinking about it and the breakouts went away about a year and a half ago, when I got more sensitive to gluten and went really strict on the diet. Maybe it is herpes and my immune system is just handling it better off gluten, but my bet is DH because of the extreme itching.