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alex11602

Diagnosed Over The Phone

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Sorry this is so long...

I'm new here and also new to being diagnosed with celiac , I am 22, and I have a few questions. A little background...my mom was diagnosed with IBS over 20 years ago so when I started showing the same symptoms...alternating issues with the bathroom, abdominal pain, and gassiness (with fatty foods, caffiene, some dairy and if I had too many greens) she just told me I had IBS and be careful what I eat, not to go to the doctor because they would just tell me the same thing she did. So I didn't go, I ate the way she told me too and I kept having problems. The problems got worse after I had my first daughter and then worse again after having my second. All this time I am eating pasta because I never would have thought it was bothering me and it was cheap. My stomach gets worse with stress so it has been getting alot worse in the past few months...I was in the bathroom and in pain within an hour of eating. So this was affecting my life in so many ways and my husband tells me to look up other things that can eat or avoid with IBS, I do and I come across the gluten free diet and it looks promising to help my symptoms. I decide to try it and within two days I feel great...I was able to sleep and not be in pain at night. My husband tells me to call the doctor and make sure that it would be safe for the family to be gluten free since my daughters have a few of the same issues. I call the doctor and they ask my symptoms since I have never been formally diagnosed. They proceed to tell me that my stomach issues, pain, gassiness, nausea, bloating, headaches, horrible cramps and bleeding that time of the month, headaches, fatigue, depression, anxiety, racing pulse(always at least 120), joint pain(especially my hip...diagnosed with osteo ilia candisis(i think it was called)), trouble sleeping, anemia, dizziness, the problems with my blood sugar(usually hypoglycemic), pregnancy problems, miscarriages, cold hands and feet which sometimes feel numb, mood swings(had been diagnosed with BPD at age 12), the fact my mother and sister have the same problems, and finally the fact that I was helped so much being gluten free were all signs of Celiac disease and that they were diagnosing me with it. Didn't want to do the tests because of false negatives and I have no insurance. And if I didn't find that strange enough they diagnosed my 1 year old too because of diarreha, fatigue, she doesn't grow as quick as others(she didn't get any longer between age 2 months and almost 9 months), anemia, sensitive stomach, the fact that she is always hungry, her pot belly, not being able to drink cows milk, cold hands and feet, and the fact that she occasionally has sandy stools(they said thats a sign of itestinal damage and want to do a colonoscopy when we get insurance for her). They also suggested that she is deficient in vitamins since a few months ago she ate a chunk of her crib(about 6 inches wide and a 1/2 in deep) while I was in the shower, they stated that they didn't know if her suspected intestinal damage is due to eating the crib a few months ago or celiac disease. They also said they suspect my 4 year old has celiac disease based on family history, having a hard time with cows milk, sensitive belly and eczema. I'm sorry this is so long, but my question if you got this far is....has anyone else had doctors diagnose them based solely on symptoms over the phone??? And does it sound like the doctor is right?

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Wow! A doctor that didn't tell you to suck it up. Your symptoms do sound consistant with celiac. Do you have a trusting relationship with this doctor? If so, and your comfortable with his suggestion and not getting further testing then go for it.

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Wow! A doctor that didn't tell you to suck it up. Your symptoms do sound consistant with celiac. Do you have a trusting relationship with this doctor? If so, and your comfortable with his suggestion and not getting further testing then go for it.

Thank you so much for your response. This whole thing is a little scary for me right now, not just for myself, but for my girls also.

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IF this is really celiac or gluten intolerance, you have nothing to be scared of, you're all relatively young, and sticking with the food you were meant to eat means you are going to get healthy or at least much healthier, and stay that way.

I am not formally diagnosed, but I had such a long list of problems, many of which went away after I went on a grain free diet, (in my mid forties) that and based on the test(s) the neuro would not admit to pointing that my theory was correct I had a diet problem (long story), that my primary care doc accepts that I am at least gluten intolerant. The odd part is that with the other symptoms, the dentists and eye opticians all readily can see it being inter related, and indeed it was several different people on different internet sites, pushing diet theory, and this one older optician who guessed that a certain otc med for heartburn was actually giving me another problem, that sort of helped weave the puzzle together.

That and I had the bright spots on the brain scan. Have regained the color vision in the one eye. NOBODY picked that symptom up and could connect it to celiac/gluten intolerance, and I had have that since a young adult, and told upteen dozens of people "I see different shades of color from each eye." I also can feel my feet now, which is actually a nuisance as they are sort of beat up at this point.

You can always do over the counter genetic testing and for the antibodies, if you are not sure.

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