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#1 runsuzannerun

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Posted 02 January 2013 - 05:17 PM

I am an emerging professional distance runner and have suffered from all of the celiac symptoms in the book. I have also had hypothyroidism for about 12 years and have had to increase my dose after every visit due to malabsorption. My symptoms started about 3 years ago when I started running and were almost unbearable, and I have also been suffering from anemia.

I only became aware of celiac disease after another runner suffering from the same symptoms was diagnosed. Not knowing much about it, I skipped the blood tests and went straight to the GI. The nurse practioner said it sounded like classic celiac and had no problem getting me in for the endoscopy. When I went in for the procedure, the official "doctor" asked me what my problems were. I told him that I am convinced I had celiac disease, and his reply was, "you don't have celiac." This really concerned me, but I was already hooked up to the IV and prepped.

When I called for my results, they said that they were negative, but they found some redness and chronic inflammation that was from gastritis. They said I should come back in for a follow-up and think about getting a colonoscopy. Completely unconvinced and frustrated, I asked to see the results for myself. They sent me the actual pictures from the biopsy, and I spent hours comparing them to other biopsies of people with celiac disease. Clearly, I am not a doctor, but my biopsies looked identical to other biopsies with a celiac disease diagnosis! The vili are definitely blunted and much shorter than they should be.

I self-diagnosed myself with celiac disease and went gluten-free for what's been 4 months now. I started feeling almost 100% better after about a month, but now I am having some other problems that are representing a hyperthyroid. I feel that my gut is able to absorb my synthroid much better now, that I am actually overmedicated.

This has now brought me back to the frustration of getting the proper diagnosis for celiac disease and seeing a doctor who actually knows about the connection between celiac disease and other autoimmune disorders such as Thyroiditis. I feel really helpless and am looking for some advice as to who I should see. I live in the San Diego area and would appreciate any feedback. Is it possible to just take my biopsy results to another doctor?

Please help!
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#2 mushroom

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Posted 02 January 2013 - 05:40 PM

Was there a pathology report from a pathologist, or did the doctor 'read' the slides himself? I would ask that the slides by read by another pathologist, if you have seen the pictures and they look blunted to you. Once this has been done it would be best to consult an endocrinologist about your thyroid problems armed with this information. It is quite probable that now you have rid yourself of the gluten burden you will need a lower dose of whatever thyroid medication you are on.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 runsuzannerun

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Posted 02 January 2013 - 05:57 PM

Was there a pathology report from a pathologist, or did the doctor 'read' the slides himself? I would ask that the slides by read by another pathologist, if you have seen the pictures and they look blunted to you. Once this has been done it would be best to consult an endocrinologist about your thyroid problems armed with this information. It is quite probable that now you have rid yourself of the gluten burden you will need a lower dose of whatever thyroid medication you are on.


Hi, thank you for your response. This is my first time using the boards, and I think I may have clicked on the wrong button to respond. I don't know what I did there, so sorry about that.

Yes, the results were sent to a pathologist. How do I find another pathologist to look at them? I do have an endo who I see regularly, but she didn't seem to really "buy" the celiac thing, which has really turned me off, and I am now searching for a new doctor.
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#4 mushroom

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Posted 02 January 2013 - 08:00 PM

The first thing you need is a copy of the pathologist's report so you can find out the lab that read them initially. Then ask you doctor for a recommendation of someone else to give you a second opinion. We would be interested if you cared to post the report here on the forum too :) because inflammation is also the earliest sign of celiac damage.

Have you had your hormone levels rechecked since you have been gluten free? These really need to be rechecked now that you are no longer eating gluten. If your endo won't rereun them ask your primary care to do it - TSH, free T4 and free T3.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 Chaff

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Posted 02 January 2013 - 09:45 PM

Nice to see another ultrarunner here! If you stick around on the boards, please keep us updated on how you're doing on the Sports and Fitness board. I'm having to take a break from training until I heal up. There are some good threads on gluten-free long-run fueling if you search the boards, too.

Did you ever get the celiac blood panel done, too? I had a negative biopsy -- the GI thinks he missed the damage -- but a positive blood test. The GI diagnosed me based on the blood tests and my symptoms and response to the gluten-free diet. You could also get the genetic test.

Anyway -- something to consider. But there is nothing wrong with diagnosing yourself. If you are OK going on the gluten-free diet, and you improve, then you've solved your own problem. The only reason to get a firm diagnosis -- apart from the psychological/social factors, although they are important -- is to rule out something else. Celiac feels like a lot of other diseases, especially other autoimmune diseases.

No matter what you end up having, you may want to get a full nutritional workup regularly to make sure you are getting the vitamins/minerals you need so you can supplement. Ideally you would need them less and less after going gluten-free for a year or so.
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#6 runsuzannerun

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Posted 03 January 2013 - 02:26 AM

The first thing you need is a copy of the pathologist's report so you can find out the lab that read them initially. Then ask you doctor for a recommendation of someone else to give you a second opinion. We would be interested if you cared to post the report here on the forum too :) because inflammation is also the earliest sign of celiac damage.

Have you had your hormone levels rechecked since you have been gluten free? These really need to be rechecked now that you are no longer eating gluten. If your endo won't rereun them ask your primary care to do it - TSH, free T4 and free T3.


Thanks for the advice. I will be looking into getting a second opinion over the next couple of days. It's not that I need a doctor to actually tell me that I have celiac disease in order to stay off gluten, it would just be nice to have a simple response when I see doctors to check my thyroid/ferritin/metabolic panels and so forth without having to explain myself to death as to why I think I have it.

I am in the process of finding a new endocronologist and getting my thyroid levels checked. I am definitely experiencing hyperthyroid symptoms for the first time and have been reading how a gluten-free diet can significantly improve thyroid function. This is great news!

I would love to post my pathology report on here, but I'm not sure how to do it. I can't figure out how to attach an image. I could post a PDF. I would love to hear anyone's thoughts!
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#7 runsuzannerun

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Posted 03 January 2013 - 02:37 AM

Nice to see another ultrarunner here! If you stick around on the boards, please keep us updated on how you're doing on the Sports and Fitness board. I'm having to take a break from training until I heal up. There are some good threads on gluten-free long-run fueling if you search the boards, too.

Did you ever get the celiac blood panel done, too? I had a negative biopsy -- the GI thinks he missed the damage -- but a positive blood test. The GI diagnosed me based on the blood tests and my symptoms and response to the gluten-free diet. You could also get the genetic test.

Anyway -- something to consider. But there is nothing wrong with diagnosing yourself. If you are OK going on the gluten-free diet, and you improve, then you've solved your own problem. The only reason to get a firm diagnosis -- apart from the psychological/social factors, although they are important -- is to rule out something else. Celiac feels like a lot of other diseases, especially other autoimmune diseases.

No matter what you end up having, you may want to get a full nutritional workup regularly to make sure you are getting the vitamins/minerals you need so you can supplement. Ideally you would need them less and less after going gluten-free for a year or so.


Hello! I would hardly call myself an ultra-runner. ;) I run about 65 miles a week and specialize in the 5/10k, but it's nice to meet another runner on here! I will definitely check out that part of the site and keep you posted! I'm sorry that you're not able to train right now! That's always so difficult.

As for the blood panel, no, I never did that. I went straight to the GI, because it's the "gold standard," and they did the endoscopy. I went gluten-free as soon as I had the procedure, because I was so certain that it was my problem, and I didn't want to wait to start the diet. I'm regretting it now. I absolutely will not do the "gluten challenge," because it really affects my running, and I can't afford any setbacks and do not want to experience those problems again.

Being a competetive runner (and a hypochondriac), I actually get blood tests, CBC, metabolic panels, and my thyroid checked quite often so that I know I am at my very best. The only two things that I have really struggled with in the past were getting my thyroid levels and my iron/ferritin levels up. No matter how much synthroid or liquid iron I was taking, they never seemed to go up. I am really looking forward to seeing what they are now after being gluten-free for 4 months. :)
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Also tagged with one or more of these keywords: diagnosis, chronic inflammation, thyroid, second opinion, misdiagnosis, autoimmune disease

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