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Furious With Stupid Doctors


MarsupialMama

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mommida Enthusiast

A gluten challenge can be dangerous. My daughter who was about 16 months at the time of the challenge ended up in the hospital for dehydration. The explosive "D" in her diapers ended up giving her a (UTI) Urinary Tract Infection. Giving her the antibiotic (that should have been gluten free) started vomitting that would not stop. She was in the hospital about 2 days and I am very lucky that at least one of the doctors from the ped's office come in to the hospital daily. So there is another doctor that is familiar with you and your child.

There was one very young and STUPID doctor that came in and tried to test her for meningitis. I don't think his name really was "Doogie Dipsh(*!" but that what he answered to that day. He verbally got it from me that day. Never showed his face again. I think I have some hospital notes about me ;) .

This dietician and doctor should have a complaint made against them. Saying a gluten free diet is a "FAD" is not acceptable. A gluten free diet is the only known medical treatment for Celiac Disease, Gluten intolerance, and Dermatitis Herpiformis. A diagnosable disease is not a fad.


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beefree11 Newbie

Open Original Shared Link

In the above link I have read:

A review paper in The New England Journal of Medicine listed 55 "diseases" that can be caused by eating gluten. (iv) These include osteoporosis, irritable bowel disease, inflammatory bowel disease, anemia, cancer, fatigue, canker sores, (v) and rheumatoid arthritis, lupus, multiple sclerosis, and almost all other autoimmune diseases. Gluten is also linked to many psychiatric (vi) and neurological diseases, including anxiety, depression, (vii) schizophrenia, (viii) dementia, (ix) migraines, epilepsy, and neuropathy (nerve damage). (x) It has also been linked to autism.(ix)

We used to think that gluten problems or celiac disease were confined to children who had diarrhea, weight loss, and failure to thrive. Now we know you can be old, fat, and constipated and still have celiac disease or gluten sensitivity.

There there is:

The question that remains is: Why are we so sensitive to this "staff of life," the staple of our diet?

There are many reasons ...

They include our lack of genetic adaptation to grasses, and particularly gluten, in our diet. Wheat was introduced into Europe during the Middle Ages, and 30 percent of people of European descent carry the gene for celiac disease (HLA DQ2 or HLA DQ8), (xii) which increases susceptibility to health problems from eating gluten.

American strains of wheat have a much higher gluten content (which is needed to make light, fluffy Wonder Bread and giant bagels) than those traditionally found in Europe. This super-gluten was recently introduced into our agricultural food supply and now has "infected" nearly all wheat strains in America.

Something else interesting:

The Elimination/Reintegration Diet

While testing can help identify gluten sensivity, the only way you will know if this is really a problem for you is to eliminate all gluten for a short period of time (2 to 4 weeks) and see how you feel. Get rid of the following foods:

sb2178 Enthusiast

You could also demand a rectal biopsy and gluten challenge. It's not really used in the US, but is less invasive and does not require a challenge because the gluten is applied to the already taken biopsies.

I don't know how accurate it is.

If it makes you feel any better, my pediatrician also called my childhood vegetarian diet restrictive. Heck, my adult doctors called a low meat (but normal total protein) intake restrictive. Restrictive is not necessarily bad unless growth and nutrient intakes are affected. Your kids eat fruit and vegetables, so they're better off than many American kids! Point out that they eat grains, just not wheat/barley/rye.

Neutney Newbie

I also feel your pain. My daughter is only one and we began seeing signs of celiac very early...three months. I love my bread! When she started on solids anything with dairy/wheat were no good. More stomach issues and still has not slept through the night at 1 year. My pediatrician on her own said to cut out the dairy/gluten for a month. We did and noticed results. She wasn't in pain anymore! Still not a good sleeper but that is just her. So, next check up I asked to be referred to a GI doc and when I was there, she called him to consult on what to do/test for celiac. He said she should have not been take off gluten to begin with and now we would have to put her back on it. So, we did but couldn't last more than 5 days. Now we (living in Canada) cannot get support or join the celiac association because we cannot live with putting her in pain just for a diagnosis. There are lots of benefits to those 'members'...most gluten-free stores give huge discounts and there is lots of support locally. Not for us though.

Not fair!

Sorry...no advice other than use your parental instincts...we should be listening more to them!

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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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