Too Many Ah Ha! Moments

[Smarts]

I haven't posted here in such a long time. When I last posted I was very confused. A top gastro enterologist was trying to get to the bottom of "The Family Tummy" as I call it, as stomach (and many other health) disorders have been passed down from generation to generation. After 2 years of testing and only concluding that I am very anaemic, have a hiatus hernia and reflux, he ran a capsule endoscopy which showed flattened villi. He then ran a gene test, and when I asked for the results he quickly dismissed gluten intolerance and in fact said that I could not possibly have any type of food intolerance. He then backtracked and denied seeing flattened villi on my endoscopy, despite the fact that he had originally run those images past me. Meanwhile I had cut gluten out of my diet and that of my children (my eldest daughter (9) also has numerous stomach and skin complaints) and I was seeing positive results. Confused and upset I went to see a friends doctor who, while not as eminent or qualified as the first guy, gave me my blood test result, showing that I carry the DQ2 gene and have a 1 in 20 chance of celiacs disease.

I have never been back to the first doctor!! The second doctor tested both my girls and they both carry the same combination of DQ2 genes. Since June I have followed a strict gluten free diet and also eliminated corn which also disagrees with me. When I slip up I sure as hell know about it 2 hours later. My other child has gone back on to eating gluten (she didn't like missing out at parties) and has shown no ill effects, but my 9 yr old is not so lucky.

Last night my daughter came to me with a mysterious rash all over her arms and was doubled up in the bathroom with tummy cramps and felt sick. The only other time I had seen that rash on her was a month after she had quit gluten, and accidentally ate a bag of chips that she thought read 'gluten free' but instead read 'contains gluten'. I looked over her diet for the weekend. The only unknown was a Chupa Chup lolly I let her have that morning. But I was sure they are gluten free. I've just visited trusty Google, and sure enough Chupa Chups are gluten free except for one flavor, Cola, the very flavor that my daughter had chosen.

I'm finding it harder to deny that Celiac disease is a reality in our family. The medication that I once relied on so heavily to control reflux, indigestion, heartburn, is now sitting untouched in the bathroom cabinet - the repeat scripts are in a drawer turning yellow. But there are so many sceptics, especially among our doctor friends and family. But my health and the health of my daughter speaks volumes to me. I went to see a psychic last week. I am a healthy sceptic there, but this lady is pretty accurate in her assessment of peoples character. I asked her for some insight into my health. "You" she said "have flattened villi which will heal fully in time on the correct diet, the doctor did not even read your blood test result before delivering your diagnosis and is only interested in the money he makes off his patients. He is a thief and has done this before and will continue to do so." It brought to mind articles I have read about doctors who won't diagnose Celiac disease because there is no money to be made out of it.

[mushroom]

I haven't posted here in such a long time. When I last posted I was very confused. A top gastro enterologist was trying to get to the bottom of "The Family Tummy" as I call it, as stomach (and many other health) disorders have been passed down from generation to generation. After 2 years of testing and only concluding that I am very anaemic, have a hiatus hernia and reflux, he ran a capsule endoscopy which showed flattened villi. He then ran a gene test, and when I asked for the results he quickly dismissed gluten intolerance and in fact said that I could not possibly have any type of food intolerance. He then backtracked and denied seeing flattened villi on my endoscopy, despite the fact that he had originally run those images past me. Meanwhile I had cut gluten out of my diet and that of my children (my eldest daughter (9) also has numerous stomach and skin complaints) and I was seeing positive results. Confused and upset I went to see a friends doctor who, while not as eminent or qualified as the first guy, gave me my blood test result, showing that I carry the DQ2 gene and have a 1 in 20 chance of celiacs disease.

I have never been back to the first doctor!! The second doctor tested both my girls and they both carry the same combination of DQ2 genes. Since June I have followed a strict gluten free diet and also eliminated corn which also disagrees with me. When I slip up I sure as hell know about it 2 hours later. My other child has gone back on to eating gluten (she didn't like missing out at parties) and has shown no ill effects, but my 9 yr old is not so lucky.

Last night my daughter came to me with a mysterious rash all over her arms and was doubled up in the bathroom with tummy cramps and felt sick. The only other time I had seen that rash on her was a month after she had quit gluten, and accidentally ate a bag of chips that she thought read 'gluten free' but instead read 'contains gluten'. I looked over her diet for the weekend. The only unknown was a Chupa Chup lolly I let her have that morning. But I was sure they are gluten free. I've just visited trusty Google, and sure enough Chupa Chups are gluten free except for one flavor, Cola, the very flavor that my daughter had chosen.

I'm finding it harder to deny that Celiac disease is a reality in our family. The medication that I once relied on so heavily to control reflux, indigestion, heartburn, is now sitting untouched in the bathroom cabinet - the repeat scripts are in a drawer turning yellow. But there are so many sceptics, especially among our doctor friends and family. But my health and the health of my daughter speaks volumes to me. I went to see a psychic last week. I am a healthy sceptic there, but this lady is pretty accurate in her assessment of peoples character. I asked her for some insight into my health. "You" she said "have flattened villi which will heal fully in time on the correct diet, the doctor did not even read your blood test result before delivering your diagnosis and is only interested in the money he makes off his patients. He is a thief and has done this before and will continue to do so." It brought to mind articles I have read about doctors who won't diagnose Celiac disease because there is no money to be made out of it.

Get thee to your doctor's office right away and fill out a request for release of all medical records (to you), including the results of all blood testing and pathology reports. You need to see for yourself what those reports say. They may charge you for them but it will be worth the price of admission.

[ravenwoodglass]

Get thee to your doctor's office right away and fill out a request for release of all medical records (to you), including the results of all blood testing and pathology reports. You need to see for yourself what those reports say. They may charge you for them but it will be worth the price of admission.

I agree with this strongly. Then make copies of them to give to any new doctors and keep a copy for yourself. It is a good idea to do this on a regular basis. Glad you are seeing such good results for your family.

[Robert16]

It brought to mind articles I have read about doctors who won't diagnose Celiac disease because there is no money to be made out of it.

That is so very true i think back now its been a year gluten free already quit eating alot of other stuff before that and when i went back to gastro doc he just told that was not my problem like i was a idoit aint been back but the above statment you made is So True So Very True.

[Smarts]

That is so very true i think back now its been a year gluten free already quit eating alot of other stuff before that and when i went back to gastro doc he just told that was not my problem like i was a idoit aint been back but the above statment you made is So True So Very True.

I'm learning to deal with the anger that this brings up. What amazes me is that here is a true medical condition, for all of us, our lives are much improved simply by avoiding eating several foods, less health problems, less strain on the health systems - but then again our suffering is lining the pockets of some fat, greedy money hungry 'doctors'. What hurts me the most is that this doctor, and a couple of acquaintances who are doctors, look on me as having a very limited intellect.

I'm in Australia so I'm not sure if access to medical records is the same as in the States, but 9 months ago when this was all blowing up, I phoned the gastro for my medical records.... 3 times, followed by my husband then calling again. The records never arrived. So I went to my GP who gave me everything that they had on file. There was no blood test results, no endoscopy or capsule endoscopy or colonoscopy or ultrasound results at all (yes I'd felt like a walking talking lab animal under that gastro). But there was a letter, explaining why he had me on Pariet tablets and had also upped the dosage .. something along the lines of "there is no medical reason I can see why this patient gets relief from these tablets, but she says they really do help. Bearing in mind her family history of cancer, I think it wise that she continues to take Pariet". For the record I had often complained to him that Pariet did not make me feel better, which is why my dose was increased. There have been very few cases of cancer in my family, mainly in the elderly and rarely were fatal. Heart disease is my family's no.1 killer!! When my GP confronted him for the capsule endoscopy results he told us that the test was in fact clear. The 2nd doctor I went to, then phoned up the pathology company and they faxed through the gene test rsult which was positive. If I do ever receive my capsule endoscopy results how can I be sure that what that doctor wrote was not another lie and that any film has not been tampered with?

[ravenwoodglass]

If I do ever receive my capsule endoscopy results how can I be sure that what that doctor wrote was not another lie and that any film has not been tampered with?

You can't know for sure. I would report this doctor to whatever governing head there is for medicine where you are. If there is no way to see another doctor who will do the testing, if you haven't already been gluten free, then do go ahead and try the diet.