Just Diagnosed- But Untraditionally. Need Validation.

[anniebeth]

I have had multiple health problems my entire life, but just recently realized they were all symptoms of celiac. My daughter Emily (who is about to turn 2) had reflux and severe diarrhea, as well as growth problems. Months ago her pediatrician thought she had celiac, but the blood test at that age is so controversial that we knew it probably wouldn't be accurate. I wasn't thrilled at the idea of the biopsy, so we just went with an elimination diet just to see what would happen. We started seeing results almost immediately. Her diarrhea stopped and she started growing. The acid reflux is gone. During this time I went gluten free as well in order to come up with better meal plans for her. To my surprise, I started seeing some of my chronic health problems disappear. I started looking up symptoms online, and I had a lot. Short stature (4'11"), IBS, anemia, reflux, dental enamel problems (all of my 12 year molars came in without enamel and had to be pulled), scoliosis, rheumatoid arthritis (went away after 3 months gluten free), menstrual/hormonal problems, chronic sinusitis and bronchitis/asthma (what the doctor called non-allergic allergies), nausea, gas, stomach pain, OCD, anxiety (which I had just this year started taking medication for) and more. Good grief. I even had one nurse tell me she thought I had an autoimmune disease, but no one ever mentioned celiac. So anyway, once again, I didn't want to do the biopsy or the blood test (since I would have to start eating gluten again), so I figured I'd do the DNA testing. If I didn't carry any celiac genes, then I would know this was all coincidental. However, I got the results back yesterday, and I am DQ8/DQ8. Sorry kids. This answers the question as to whether I could have passed it to poor Emily. So, even though I didn't do the biopsy, I already know that being homozygous DQ8 makes me 10x more likely to have or to develop celiac disease. I also have almost every type of symptom you can have, and the ones that are able to be alleviated have gone away completely or partially since going gluten free. I will admit, though, before the genetic test, I would cheat occasionally- but now I am going to be very serious about it. I have people in my family dying of cancers that are known to come from undiagnosed celiac disease. The problem is, I still feel like people think I'm making this up because I didn't do the blood test or biopsy. I guess that in theory, even if I didn't have celiac, the fact that I am at high risk for developing it should be able to justify going gluten free, but I just feel like I am lying to people when I say "I have celiac" despite the fact I am certain I DO have it. The most obvious thing to me was when I woke up 3 months after going gluten free and could actually make a fist first thing in the morning. I haven't been able to do that since high school. I just can't justify harming my body to take a test that may or may not be accurate if it is not done or read properly. Anyway, I guess I was just hoping to hear from someone that it is alright to say I have celiac despite no blood test. Sorry for all the rambling.

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[flourgirl]

Hi Anniebeth! A diagnosis, is a diagnosis. You have the genes, you have the symptoms and relief from those sympoms with the diet. You know what you have to do and why, and what anybody else thinks just does not matter. Hurray for you for taking good care of your own health! I also found lots of "symptoms" (which I had become used to as "normal" for me) start melting away since my diagnosis. Pretty bad when we, AND our doctors, attribute poor health as just being normal for you. Years later you get cancers, or other serious problems and nobody can guess how it is you got it!?! Not acceptable to me. Anyway, I wish you luck and years of good health!

[Takala]

I just tell people I AM gluten intolerant, if the subject comes up. Sometimes when it has to be a super short conversation and we're both in a hurry, I abbreviate it to "sorry, wheat allergy, thanks for offering, but I really can't !" While technically, this is not correct, it does get the point across that the food offering has cooties and that's why I'm not touching it. I don't worry about getting the Princess Tiara and Good Housekeeping Seal of Approval

[ranger]

I don't have an official DX, either, but I do refer to myself as celiac. Mostly so people will take it as seriously as it needs to be taken. If I say gluten intolerant or wheat allergy, they think that if I eat a peice of of bread that it will make me sneeze when, in reality, a piece of gluten that you can't even see will make me sick for days. Besides, I know that I'm celiac and it doesn't matter who thinks what - I'm not going to be sick anymore. And I'm not willing to be sick to take a test to "prove" to anyone that which I know to be true. Do what you need to do to stay healthy.

[Welda Johnson]

Hi,

I hope that you are adjusting well to your new diet--it sounds as though it has been life-changing for both you and your daughter! Have you heard of Enterolab.com, through whom you can get home testing kits for Celiac and milk intolerances? I ordered a full spectrum test for my newly-born grandson to verify that his diarrhea and vomiting were caused by his milk formula, and he was also gluten intolerant. It was a simple stool sample test, and really gave me a lot of information for dealing with his diet, since I was his primary daycare provider at the time. I also ordered gluten testing for my sister, brother, and children, but only my sister and brother used them. My sister has gluten intolerance and my brother doesn't (I am intolerant of all grains, all milk & dairy, egg whites, yeast, casein, whey, and some other food additives). I wish you the best as you learn what works for you.

Takala--I agree wholeheartedly with your message. I'm so glad I read it, because it reminds me that we need take no baloney from anyone, especially those who have never tried to discipline themselves stringently to the Celiac diet, which is definitely a challenge. I applaud your gumption, and I really enjoyed reading your message.

Always, Welda