Two Docs With Differing Opinions

[IrishHeart]

JUST CRAZY! And I do appreciate the sharing. I have asked myself a ton of questions since my appt with old doc. What I do know for sure, is that sine going off gluten there has been more than a change in my digestive system, I contribute my emotional health now to a gluten-free diet. I have been troubled with depression and have had times of great anger and have just losts it and all of tha has improved, definately not over night but I don't tend to sink so low and I can let go better than I was better. I think when gluten really messes with your body, the damage is all too hidden.

Thanks! for all the responses ansd the wonderful support here everyone!! Mushroom is exactly right, what a ride docs can put you thru emotionally. IrishHeart, keep being strong and thank you!

Hon, I have to tell you in all honesty (because I always am!) that it took me nearly a year to get rid of about 2/3 of my MANY symptoms. I still have a long way to go. The NEURO issues take the longest to resolve--from what I have researched & read and from personal experiences that people have generously shared with me. I think a DX at our age (and I am probably older than you are ) requires longer healing time. Many veterans on here --and they have been honest and compassionate--have told me it was 2 or 3 years before they felt really well. But it was the best they felt in their whole lives!

The first 9 months gluten-free, I worried that I still had other AI diseases and deficiencies because I was not feeling as well as I had anticipated and still had some lingering anxiety and depression (both of which erupted because of celiac and were very disturbing to me ), balance issues, numbness, burning, tingling, profound muscle weakness and joint/bone pain, etc. Throw in continuing hair loss and well, I was certain something else HAD TO BE going on. My friend with MS asked me several questions to see if that may be it. I had already seen 3 neuros, 3 rheumies and an endo in the years before DX--no answers.

Fortunately, my new doctor is thorough and he insisted on testing me for other GI diseases, lymphoma, and runs lab work like crazy. His best advice was "Give it time". When I asked tearfully, "why is (fill in the blank) still happening?" He calmly said, "You will not like this answer, but it's the truth--it's from the celiac. Your hypoglycemia, hypocalcemia, thyroiditis, vit. defs., anemias, secondary issues??--all from celiac. It's going to get better--but it may take years and you have to just let it happen. Eat well, get rest, don't try to overdo it because your muscles were seriously impacted--and stop worrying. You figured it out, now let your body recoup"

A few vets on here told me the same thing--and so, I just calmed down about it all because certainly, stressing over it was not helping one bit. Our adrenal glands are already tapped out pretty good from this disease process. I spent 3+ years on hyper-overdrive from this disease and stressing about what the hell had gone so wrong inside me.

It has taken patience to tell myself over and over again I'm going to feel better and better as I heal. And you know what? He was right. Things improved steadily and I went from being unable to even open a jar of peanut butter or dress myself and living in a gluten stupor, banging into walls as I walked ---to moving some firewood yesterday and multitasking once more. I am not the irritable, angry, stressed-out "gluten head" woman anymore. (which is great, because I do not like HER and I felt like someone had drugged me and taken over my body and brain! ) It was like a really bad sci-fi movie.

Am I "all better" yet?--heck no, I have significant nerve/muscle/joint/bone pain--but I know in my heart it will get better and better as I remain gluten-free and my body heals. YOU BELIEVE THIS TOO!

Make sure your doctor--whichever one you choose--checks your blood work and makes sure that your levels are where they should be.

Hang in there, hon.

Cheers, IH

[AVR1962]

Thanks IrishHeart, you're right. There's nothing to prove, investigate or figure out really. I'm doing what is working and I am improving so I press on as is.

[IrishHeart]

Thanks IrishHeart, you're right. There's nothing to prove, investigate or figure out really. I'm doing what is working and I am improving so I press on as is.

Of course, if you have worsening symptoms or things change, see the doc. But otherwise, you have done your homework ! Take care, hon!

[Skylark]

Really? This makes e feel a little less frustrated with the situation knowing someone else has been thru the same. I wonder why the hesitation among doc for celiac diagnosis.

Doctors see people who flatly refuse life-saving lifestyle changes every day. They see people with emphysema who still smoke, alcoholics who are dying of liver failure and still drinking, and huge numbers of people with metabolic syndrome who could change their lives by losing 50 lbs. Most refuse the lifestyle changes and ask for pills. It makes some doctors very reluctant to diagnose something like celiac disease that requires a difficult diet unless they are 100% certain.

Doctors are also trained to avoid diagnosis of a life-long, major autoimmune illness unless they are 100% certain. 100% certain unfortunately means positive blood test and Marsh 3 or 4 biopsy, even though we know how wrong that approach is here.

[AVR1962]

Doctors see people who flatly refuse life-saving lifestyle changes every day. They see people with emphysema who still smoke, alcoholics who are dying of liver failure and still drinking, and huge numbers of people with metabolic syndrome who could change their lives by losing 50 lbs. Most refuse the lifestyle changes and ask for pills. It makes some doctors very reluctant to diagnose something like celiac disease that requires a difficult diet unless they are 100% certain.

Doctors are also trained to avoid diagnosis of a life-long, major autoimmune illness unless they are 100% certain. 100% certain unfortunately means positive blood test and Marsh 3 or 4 biopsy, even though we know how wrong that approach is here.

I never thought of it in the terms of how difficult the diet is and that makes perfect logical sense.

[IrishHeart]

Doctors see people who flatly refuse life-saving lifestyle changes every day. They see people with emphysema who still smoke, alcoholics who are dying of liver failure and still drinking, and huge numbers of people with metabolic syndrome who could change their lives by losing 50 lbs. Most refuse the lifestyle changes and ask for pills. It makes some doctors very reluctant to diagnose something like celiac disease that requires a difficult diet unless they are 100% certain.

Doctors are also trained to avoid diagnosis of a life-long, major autoimmune illness unless they are 100% certain. 100% certain unfortunately means positive blood test and Marsh 3 or 4 biopsy, even though we know how wrong that approach is here.

Excellent points, Skylark!

And, my new GI doctor (who is in his early 30's) has told me that many of his colleagues are not convinced that Celiac is as prevalent as it is. It's under-diagnosed and it is not really discussed that much in medical school or even in the GI specialty. He told me he presented my case to his colleagues and they all said they had no idea it could manifest like that (meaning the multitude of symptoms I had my whole life, with severe "triggering" at age 50 with drastic weight loss and the onset of the Neuro symptoms)

My former GI did not see it for 12 years. Had I not burst into burning pain and gluten- headed stupor back in 2008, (because those NEW symptoms got my attention) --I probably STILL would be going along thinking it was "IBS, GERD, Fibro, menopause, stress, anxiety" and all the other BS they told me it was--and I might never would have researched myself crazy until I figured it out. And stopped all that madness!!

We need the "new breed" coming out of med school now to be as celiac-savvy as possible.