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Smoly

Doctor'S "Diagnosis"

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I finally saw a gastroenterologist today after waiting for almost 5 months and it was definitely not worth the wait. The doctor said that he finds "young women tend to bloat as the day goes on" and this was probably my problem, that and my diabetes. Never mind the nausea, cramping, diarrhea, extreme fatigue, rash, etc. I just need some metamucil and I'll be fine. No further investigation necessary. My chance of having celiac is "1 in 10000" according to him since I had negative bloodwork (no total IgA done though) and I would have known if I had celiac when I was a child. I know that doctors are often uneducated but I wasn't expecting it to be this bad. Now that I know I'm not having any testing done I'm just going to go ahead and try the gluten-free diet but it would have been nice to have some support from a doctor. He actually wrote on a script and gave it to me, "Not celiac. Suspect related to the diabetes. Suspect the bloating of young women. Put on treatment - psyllium husks".

Thanks for listening to me vent and if anyone can suggest a decent gastroenterologist in London, Ontario that would be great.

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I'm really sorry you waited so long for nothing. Here's hoping the diet gives you some relief. Your doctor was woefully ill informed.

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I had terrible bloating -- looked like I was about to give birth any minute.

4 months gluten free - still have rash, but have lost 25-30 lbs, and my stomach is almost flat, and I could still loose about 5-10 lbs to be back to my normal weight and size 6/8.

I don't know if I am intolerant or celiac...but wheat and gluten does not agree with me. My allergies are also better.

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I finally saw a gastroenterologist today after waiting for almost 5 months and it was definitely not worth the wait. The doctor said that he finds "young women tend to bloat as the day goes on" and this was probably my problem, that and my diabetes. Never mind the nausea, cramping, diarrhea, extreme fatigue, rash, etc. I just need some metamucil and I'll be fine. No further investigation necessary. My chance of having celiac is "1 in 10000" according to him since I had negative bloodwork (no total IgA done though) and I would have known if I had celiac when I was a child. I know that doctors are often uneducated but I wasn't expecting it to be this bad. Now that I know I'm not having any testing done I'm just going to go ahead and try the gluten-free diet but it would have been nice to have some support from a doctor. He actually wrote on a script and gave it to me, "Not celiac. Suspect related to the diabetes. Suspect the bloating of young women. Put on treatment - psyllium husks".

Thanks for listening to me vent and if anyone can suggest a decent gastroenterologist in London, Ontario that would be great.

Wow...that's just...wow. Is there any place you can write a review of him or otherwise let people know how uneducated he is about celiac? You might be able to save some other people some time and keep them from being misdiagnosed.

In the meantime, I'd get a new doctor and retake the full celiac panel before the gluten-free diet takes effect. What were your results exactly? Keep in mind, it might not be celiac--but things like 'young women tend to bloat as the day goes on' is just pure nonsense.

You should get checked for other allergies and intolerances--those could be causing the bloating and diarrhea. Have you been checked for Crohn's, ulcerative colitis, gallbladder problems, etc?

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BOLOGNA!!! That Dr. was no good to you. And I'm sorry for that. I went undiagnosed for 2 decades!!! He gave you a lame answer. Find a D.O. He was the first one to really listen to me and diagnose me correctly. He also marries traditional medicine with homeopathic. But either way. The best Drs. I've ever had were all D.O.s. They just listen better. Try the saliva test. And that Dr. needs to get his facts straight. I believe it's closer to 1 in 100. I hope that helps a little. Trust your gut. It's probably right. My Dr. is wonderful, he says it's his experience that women's gut/intuition about their health is usually right. I'm just glad he listens. I feel better than I ever have though I have other issues that we are working on resolving. I know I'm not out there hopeless, helpless. Fight for your health. You won't be sorry.

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Wow...that's just...wow. Is there any place you can write a review of him or otherwise let people know how uneducated he is about celiac? You might be able to save some other people some time and keep them from being misdiagnosed.

In the meantime, I'd get a new doctor and retake the full celiac panel before the gluten-free diet takes effect. What were your results exactly? Keep in mind, it might not be celiac--but things like 'young women tend to bloat as the day goes on' is just pure nonsense.

You should get checked for other allergies and intolerances--those could be causing the bloating and diarrhea. Have you been checked for Crohn's, ulcerative colitis, gallbladder problems, etc?

I'm debating on whether or not it's worth the wait to see a new doctor since it took so long for me to get into this one. He did some blood work to check for inflammatory responses as well as for Total IgA. He said that if the bloodwork indicates inflammation, he'll do a colonoscopy (woohoo :P) but was pretty dismissive regarding any further testing/investigation. I'll wait until I get the bloodwork results back and then will talk about it with my family doctor (who seems to know a lot more than he does as she was the one who suggested that the bloodwork often gave false negatives). I've had 2 TTG IgA tests done which were 0.2 and 2.2 in July and October of last year, no other celiac tests though.

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My chance of having celiac is "1 in 10000" according to him since I had negative bloodwork (no total IgA done though) and I would have known if I had celiac when I was a child.

If you do research and you know more than the doctor, it's okay to make that known, but not in a rude way. I remember reading in several reputable places that celiac's typically manifests itself in childhood or in a person's 30's/40's - usually with a triggering event (parasite, childbirth, injury, etc). So it would be fair to say to that doctor or the next one: 'I know we used to think that celiac's is a childhood disease - especially since it's such a hard disease to track - but of course now we know it's not just a childhood disease - so I'd like to get the FULL panel run. Thank you so much...'

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If you do research and you know more than the doctor, it's okay to make that known, but not in a rude way. I remember reading in several reputable places that celiac's typically manifests itself in childhood or in a person's 30's/40's - usually with a triggering event (parasite, childbirth, injury, etc). So it would be fair to say to that doctor or the next one: 'I know we used to think that celiac's is a childhood disease - especially since it's such a hard disease to track - but of course now we know it's not just a childhood disease - so I'd like to get the FULL panel run. Thank you so much...'

Wow beautifully put, can u come with us on our specialists' visits? U could be an advocate. :)

I could have used u, several years ago, when I had to start educating our doctors about our multiple disabilities and we have things that a whole lot of people haven't even heard of, and their the ones that work in our medical system. It definitely is about being diplomatic. I use to bring information with me at times, and give it to them and ask them by giving it to them when they didn't know, would say, do u think that what is written in this article could be what we are living with etc...or I just simply gave it to them, when they had no idea with what we have had to live with and what they recommended we do was going to cause us terrible problems. And of course u get ones, that would be prideful and arrogant and then just treat me like u r just a mum, what would u know u haven't been to university. And then u get ones that are humble and truly want to learn. When I come upon a rude and arrogant one and I can not cope with them, I tell them simply I am going to leave because of their behaviour, I did that to one doctor and he changed his behaviour to the point we got what we came for. When u need to know and u r not feeling well etc.. u don't need people being awful. And doctors are after all just people that have their own issues, including health ones.

Now I have walked away from the rural health system and can access a city medical system, I am finally getting some where with this allergy journey, who know how to treat our disaiblities, I have not had this for twenty years, so it feels amazing amen.

There are a lot more doctors, just because u can not see one sooner, doesn't mean he is the only gut guy to go to. And its going to be a long journey and it is about relationship with ur doctors, u need to be able to be comfortable with them and vice a versa, not be in a tug of war relationship with them. Its okay to get more opinions from others. Trust is vital especially when they are going to be poking around ur internals.

Peace41

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I'm speechless.

Very close correlation between Type 1 diabetes and Coeliac Disease.

My grandmother was a Type 1 diabetic as were 3 of my aunts, as is my older son. I am not but have Coeliac Disease ( + bloodwork and biopsy)

Mum's side of the family is riddled with auto-immune disease.

AND you are hypothyroid. Do you have Hashimoto's Disease? I also have Hashi's

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I'm speechless.

Very close correlation between Type 1 diabetes and Coeliac Disease.

My grandmother was a Type 1 diabetic as were 3 of my aunts, as is my older son. I am not but have Coeliac Disease ( + bloodwork and biopsy)

Mum's side of the family is riddled with auto-immune disease.

AND you are hypothyroid. Do you have Hashimoto's Disease? I also have Hashi's

I tested negative a year and a half ago..but my doctor never gave me numbers from the test.I am getting tested again because I seem to have sensitivty to gluten..and Im thinking that a bacterial overgrowth started it all.Can anyone tell me what a celiac reading would be (the numbers)?I want to ask questions when I see the doctor,because they dont seem to want to tell you anything unless you ask.

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have a doctor maybe try the hydrogen breath test. that tests for fructose issues and my daughter has that and she bloated horribly when she was pre-diagnosed.

not saying that is what it is...but maybe good to test for it?

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I'm speechless.

Very close correlation between Type 1 diabetes and Coeliac Disease.

My grandmother was a Type 1 diabetic as were 3 of my aunts, as is my older son. I am not but have Coeliac Disease ( + bloodwork and biopsy)

Mum's side of the family is riddled with auto-immune disease.

AND you are hypothyroid. Do you have Hashimoto's Disease? I also have Hashi's

Hi Nutralady,

Celiac disease is closely correlated with MANY other autoimmune diseases, particularly the thyroid ones (Hashimoto's and Graves Disease). We have all of the above in our family, plus lupus, Addison's disease, rheumatoid arthritis, autoimmune hepatitis....you name it, I'm sure I can find a cousin of mine who has it. In my case, it's my father's family that's "riddled with" AI diseases. :)

Celiac disease is notorious for "opening the door" for other AI diseases to develop. For more information on how that happens, you might want to read this article: High zonulin levels in celiac disease can lead to other autoimmune diseases

Good luck!

JoAnn

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Hi Nutralady,

Celiac disease is closely correlated with MANY other autoimmune diseases, particularly the thyroid ones (Hashimoto's and Graves Disease). We have all of the above in our family, plus lupus, Addison's disease, rheumatoid arthritis, autoimmune hepatitis....you name it, I'm sure I can find a cousin of mine who has it. In my case, it's my father's family that's "riddled with" AI diseases. :)

Celiac disease is notorious for "opening the door" for other AI diseases to develop. For more information on how that happens, you might want to read this article: High zonulin levels in celiac disease can lead to other autoimmune diseases

Good luck!

JoAnn

Yes I know. :) I also have Hashimoto's Disease. I'm convinced that if I'd been diagnosed with Coeliac Disease many years earlier I may not have Hashi's. Thanks for the article, I'm always interested to read of the correlation.

My siggy gives you our family "history"

Somewhere I must have a rellie with Coeliac Disease. I can't believe I'm the only one. I also believe my late mother had undiagnosed Coeliac Disease, knowing what I know now.

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