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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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    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
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