Yesterday I asked my visitors to tell me how important a clinical diagnosis of celiac disease was to them. This morning my e-mail contained several responses and I haven’t even looked at the comments on my blog. Obviously, I will be writing many articles on this subject. I tried to summarize these first responses and then gave up completely — everything these people had to say was essential so I have reproduced there letters with only a very few minor omissions. Before you read the letters, here are some thoughts:
You will notice phrases in bold print in these letters. The emphasis is mine. I hope it reflects the intention of the writers.
Secondly, I will never publish names or e-mail addresses without specific permission. If you respond directly to my blog, you will be asked to give your address so that I can communicate with you. The address is not published automatically and I will never release it without permission.
Finally, the question of diagnosis is of vital concern! I’ll keep publishing your responses as long as you continue to submit them. Send me an e-mail at firstname.lastname@example.org or leave a comment at the end of this or any article.
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“I am newly diagnosed as of 2 months ago and I do have an opinion regarding diagnosis. About 4 ½ years ago I finished eating a fried chicken sandwich at Wendy’s and within 20 minutes I had the worst diarrhea of my life. I was sure that I had the flu but after several months of not being able to keep food in my system I opted to see my doctor. The best description I could give him was that “my digestive system had turned into a slip-n-slide”. I had every test imaginable (including celiac) and an ultrasound to make sure I still had my appendix—like I wouldn’t know if I had an appendectomy! The last test was the colonoscopy. The GI doctor entered my recovery room and told me and my husband that nothing was found and that “as our bodies get older sometimes they just get tired of digesting food”. I was 40. As a last resort I had all my test results sent to a new GI and he prescribed a pill I was to take 20 minutes before each meal. It certainly helped but not a great deal.
“Fast forward 4+ years and I find an integrated medicine facility located 10 miles from my home—I was looking for non-prescription help for my daughter’s very mild case of ADD. Before a patient’s first visit with this doctor you have to attend a class regarding Omega 3’s and Omega 6’s. My husband and I both attended and I scheduled myself an appt. The doctor took one look at me and identified several deficiencies immediately and suspected a malabsorption problem due to CD. I told him that I had already been tested for CD and it was negative to which he responded that the correct CD test was not done. My blood was sent for testing using the NIH standard and the results came back as he suspected—I was an off the charts celiac!!
“I started the GF diet the first week of August and I cannot even remember feeling so good! It was a total fluke that I found this doctor—I would have never, ever, requested a more in-depth test for celiac. So my opinion is that if you even think you might have CD get tested. If you are going GF without the test and are feeling better then commit to it and don’t look back. It is true that you will get a false reading if you have gone gluten free before the test.”
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“I will skip the details of reaching a diagnosis – long and frustrating, especially as our son is Chinese, and no one wanted to believe he could have celiac. Finally, upon testing, his blood work was elevated – Gliadin IgG was 10x normal. The peds GI (whom I assume has decent knowledge of celiac as he had started a local chapter of ROCK), said there are often false positives, but not when labs are that high. We had the biopsy, and that day (prior to results) started our son on a GF diet. His GI symptoms were gone in three days. Five days later, the biopsy results came in – no celiac. Some adults with celiac have said, “don’t believe the biopsy – they may have missed it.”. Some books say maybe he just didn’t have enough damage done yet. So, what are we to do? Even slight amounts of gluten are noted with return of symptoms. We have been GF 8 months now, but health care providers brush it off, saying, “But he doesn’t have celiac”. The GI office didn’t even follow up with us after the biopsy was negative despite labs and symptom resolution with a GF diet. To anyone who needs to know (nursery workers, etc.) and if they ask if he has celiac, I just say yes. I hope he doesn’t, but maybe he was lucky and changes have been made before extensive damage??? Sure would be cheaper (and easier) to not be GF, but I can’t deny the symptoms despite what the biopsy said. So, we’d love to go by diagnosis, but can’t. Wish we could.”
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“I think a confirmed medical diagnosis is 100% necessary. Without it, you are at risk if you must ever be hospitalized – especially if you are not able to advocate for yourself (i.e., unconcious, badly injured) at the time of your admission; you’ll never get a meal you can eat. You are also at higher risk with your own insurance company – if you have a diagnosis, you may be able to fight with them to get them to cover more-expensive brand-name, or otherwise gluten-free, drugs. If you have a diagnosis, you can claim the difference between regular and gluten-free items as medical expenses on your tax return …but don’t mess with the IRS without a diagnosis! If you travel, and you don’t have a diagnosis, DON’T get sick or injured; if you run into a skeptical or hostile medical care provider, you have no recourse.
“It’s possible to run into a medical provider who is unfriendly to celiacs even at home. Once when my GP was out, I had to see one of her practice’s partners. The man was actually hostile to me in questioning whether or not I was “really” celiac. I was relieved to be in a position to suggest that he call my gastroenterologist, who is the head of the Digestive Diseases Division at Johns Hopkins University. I could not have safely done so had I not had a confirmed medical diagnosis.
“Your blog post on this subject mentions publishing comments – please feel free to publish mine, but if you do so, please withold my email address. I did not respond in the comments section of your blog because the form requests an email address, and I was not certain that my address would not be published along with my comment.”
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