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Doctors?


blueshift

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blueshift Apprentice

I don't quite understand why someone should go to the doctor for diagnosis. Every time I went to them I got nothing but shrugs and " irritable bowel syndrome" like everyone else here..When I threw all my symptoms at them, they just called it "normal" and a part of getting old..Besides, I passed my physicals, didn't I?

By knowing that my niece was diagnosed with it...that another niece has had 7 spontaneous abortions, along with gut problems in siblings, myself, etc..I couldn't fathom going back to them with anything to do with my gullet..

The symptoms are fading fast..Isn't that enough? The test involves taking some into my body and I will not tolerate my bowel obstructing again like it has daily for the last 56 years..I feel better than ever and will not tolerate eating that poison again.


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celiac3270 Collaborator

Yea...those types of doctors aren't the ones you want to go to. I go to a doctor because he can monitor the medical aspect of this much, much better than I can and because my doctor is EXTREMELY knowledgeable about celiac disease... (part of the Celiac Disease Center at Columbia University).

But go with your gut! :lol: (no pun initially intended, but then I thought it was funny)

If you feel good without gluten, then that's reason enough to stay gluten-free.

ianm Apprentice

I don't have an official diagnosis and doctors were of absolutely no help to me. I am healthier at 37 than I was at 17 and that is all that matters.

plantime Contributor

If you accept the diagnosis your body is giving you, you don't need a doctor's. I am glad you are feeling so much better!

skbird Contributor

I'm not officially diagnosed, either. I did tell my doctor I was feeling better after going gluten-free for two weeks and asked if I could have tests and he said that actually, seeing a change on a diet is as good a diagnosis as any other - keep it up for 6 months and reevaluate. At that time I did the EnteroLab test and found some answers to how I have been feeling so that is good enough for me. I haven't gone back in to see my doctor since I went gluten-free but have been thinking of going in to discuss this with him. I have been trying to decide if it's worth paying for the appointment to get his stamp of approval or not, and I'm just not sure that's the case. I'll probably go in eventually.

Stephanie

marycubs Rookie

Hi -

I also was disappointed in the way two of my doctors were so quick to label it IBS and then just say 'deal with it'. As my health got worse I investigated the web and self diagnosed myself and did find a GI that knew of the disease and did a biopsy to confirm.

I've decided to try to educate people I know about celiac disease. (I've labeled myself the Ambassador of celiac disease) :P I sent an email to my primary doctor informing him of the diagnosis and my disappointment that it wasn't found earlier. I also told him that celiac disease is more common than originally thought of and I hope that as he sees patients in the future that he will remember celiac disease as a possible diagnosis.

He responded positively - said that he is open to his patients 'teaching' him. I know many doctors may not be open to our feedback - but I feel that if all of us with celiac disease make the effort to educate the health care professionals, our families and friends, than over time people will become more aware of this disease.

Mary

lovegrov Collaborator

Mine is a mixed tale. I got DH while I was in my 20s and although my doctor tried and tried to get me to go gluten-free, he also never told me about the celiac link. None of my doctors did. All I knew was that dapsone took care of the DH. I wish I had known more earlier.

However, when I DID suddenly get very ill from celiac, my GI did quickly find the reason and he told me to go gluten-free for the rest of my life. None of this stuff about going gluten-free for a while and then trying to eat gluten again. In addition, doctors for ALL of my first-degree relatives readily agreed to test them. My father, who had no obvious symptoms other than DH, was positive on everything.

richard


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    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
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