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mich56

People Think I Am Crazy

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Perhaps I have come here to vent a little, or get some advice, or just discover if it could be possible for me to have celiac.

To give a little background on myself, I will do it in point form:

1995 (I was 15) - discovered I was anemic...but never told what to do, nor take any iron supps.

1997 - got really sick, but didn't know what it was. Always tired, sore, bad digestion issues, blood in urine, high protein in urine etc

1999 - diagnosed with Interstitial Cystitis (after two years on digestion problems and blood in urine - picture the color of cranberry juice in the toilet)

2001 - many trips to the doc for extreme fatigue and depression but no official diagnosis

2003 and 2004 - two c-sections for two beautiful babies

2005 - back into docs office for depression, gut issues, blood in urine, cold, sore joints and muscles. All tests came back normal except low in iron...went to Naturopath, found out I am allergic to corn,

2006 -more digestion issues (bloating, gas, pain, brain fog, fatigue) the list goes on and on...and has continued..

Jan 07 - had what I thought was a gallbladder attack - went in, had some tests done (ultrasound and x-ray)...turned out to be a severely deformed and inflammed duodenum. Thought it was an ulcer. Went to the Gastroenterologist, has a scope done...came back normal!!!!!!!!!!

I continue to have digestion issues, gas, bloating, depression (on again, off again type thing), always have loose stools - and actually in the past ten years I have probably only ever had 3 or 4 solid movements-, migraine headaches (which only started recently), acne (again, only recently), swelling of my hands and feet, joint and muscle pain...I think that about sums it up!

The reason I have come here as well, is because I attended a semiar at my work (BTW - I am a holistic Nutritionist - which I went and learned about because of all my issues) on Sunday and was thinking that it could be possible for me. I don't know of any family member with celiac, however, with all the symptoms that present itself with celiac, I can say that many people in my family could possibly have it as well.

So any advice, thoughts, anything would be appreciated! Thanks for reading :)

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Wow, seminar at work??? what did they say? Did they mention celiac? How large a company? I have just been thinking about the huge impact that this could have on companies, a huge savings in medical expenses, as I see all the people at my company with symptoms...

read the forum all the new people posts about getting tested & then see what you want to do. If you give reasons for pro or con then we can have an idea of what you want to do & can give you some guidelines - or at least our opinions ;)

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You have nothing to lose by getting the celiac blood panel done. There can be false negatives, so a negative may be meaningless...but a positive means you have it for sure. The symptoms you have described would certainly make me suspect gluten intolerance. Stay on here, and read, read, read! Lots of great people on here, with all kinds of advice and support! Good luck.smile.gif:)


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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Wow, seminar at work??? what did they say? Did they mention celiac? How large a company? I have just been thinking about the huge impact that this could have on companies, a huge savings in medical expenses, as I see all the people at my company with symptoms...

read the forum all the new people posts about getting tested & then see what you want to do. If you give reasons for pro or con then we can have an idea of what you want to do & can give you some guidelines - or at least our opinions ;)

The seminar at work I was actually working for - so I got paid to attend. The company is called Choices Markets - offering both conventional and organic foods and health products. I currently work in the Nutrition and Health Care departments. We put on seminars for the general public...ranging from detox to supplements and the one on Sunday was exclusively on Celiac...with a store tour of all the gluten-free items we have. It was 4 hours long, and it was great! Being a nutritionist, I haven't come across or worked with anyone with celiac, so I never found a real reason to do the studying on it. Even in my Nutrition school, it was touched on, but not in great deal. So it was somewhat of an eye-opener for me.

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Thanks everyone for your replies. I definitely will be asking my doc for some blood work to see. Even if it comes back neg, I will persist (my doc has known me as long as I have had these issues) and have them do a biopsy - or perhaps the gene test? I will have to see when the time comes. I will be going in to the doc on the 13th so I will be asking for everything then. I just want to know exactly what I should be asking for. tTG, CBC, ferritin...anything else? I was also thinking of getting my T3 & T4 done (the "real" test) not just the TSH.

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So to add to my title of this thread - MY DOC NOW THINKS I AM CRAZY! She said that I am fishing for answers that aren't there. I have Interstitial Cystitis that is why I have IBS, or at least that is what she tells me. And all my other symptoms come from my IC.

I did ask her how many celiac patients she has. But that pissed her off a bit. She has a sister that is celiac and was since she was 3 so my doc KNOWS all about celiac. However, in our conversaton, I am not sure that she does. She said that the biposy I did in June showed no abnormalities (they took "a couple" of samples) and definitely no celiac. She also told me that it isn't possible to get the disease later on in life. That even if my blood work came back negative that I wouldn't and couldn't get it.

All my research on this and the seminar that I went to tells me otherwise.

I don't know anymore. Perhaps I am crazy! She just made me feel like poop. Like all the other people in my life that say I am full of it and looking for attention!! F**k people, this is real!! :angry: I have felt like this for most of my life...and it ain't normal! :(

Oh, and I did get some blood taken today - she is looking at ttg (I believe) and ferritin and B12...

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I don't know anymore. Perhaps I am crazy! She just made me feel like poop. Like all the other people in my life that say I am full of it and looking for attention!! F**k people, this is real!! :angry: I have felt like this for most of my life...and it ain't normal! :(

I KNOW! I know exactly what you mean, and it is annoying beyond words!!! :angry:

From what I know about this, which is very little, you CAN actually be gluten intolerant without celiac, that is, feel crap when eating gluten without visible intestinal damage.

On the other hand, there are plenty of other intolerances/allergies than can do bad stuff to you, obviously.

Sorry, but I don't have much meaningful to add. I just had to reply to the stuff i quoted because that's pretty much the sum of everything I think these days.

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Sorry you are going through this mich. I finally have a DX of Coeliac when I had a biopsy for something completely different. I worked out I have had it for 48 years and been mis-diagnosed with IBS / Inflammatory Bowel Disease

Don't give up, hang in there.If all else fails go gluten-free and stay gluten-free.......................celiac disease is auto-immune, are there any other auto-immune diseases in the family? My history of a/i disease in the family goes back 5 generation mainly RA and Type 1 diabetes, I drew the Hashimoto's Disease ( thyroid) and celiac disease straws.


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

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She also told me that it isn't possible to get the disease later on in life.

I was diagnosed at age 65. Had no symptoms other than elevated liver enzymes. I had just been through a very stressful situation which apparently triggered my celiac disease. Tell that ignorant fool to get herself educated about celiac disease and stop giving patients inaccurate, false information.

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She has a sister that is celiac and was since she was 3 so my doc KNOWS all about celiac.

I'm going to play devil's advocate and defend your doc a little here... I'm assuming your doctor is at least 30 years old. Which means her sister is probably at least 20? If she was diagnosed at age 3, that was 17 years ago. Not very much was known about celiac then (at least not in the US). There has been a LOT of research just in the last 10 years. If your doc is basing her knowledge of celiac on her sister's experience, she needs an update (she probably learned next to nothing about it in med school).

I just had someone email this site to me today. I don't know how accurate some of it is, but it includes an interesting time-line (pages 24-25) of celiac disease and gluten sensitivity. I don't know how to go about educating your doctor, but several of the references listed are in respected medical journals.

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The British Medical Journal even has articles about old people and obese people getting celiac, both of these groups are quite large, like 20-30%of all diagnosed.


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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I'm 52 and was just diagnosed this year. The GI who did my EGD told me that he just diagnosed an 80 year old man earlier that year who'd been sick all of his life.

FWIW: I had problems with my GP after eliminating gluten and having success with my health. :huh: So, unless this doctor gets a clue, I'd suggest you find another doctor who is open minded about all of this. You may need someone who is familiar with the problems associated with undiagnosed or untreated celiac. I did and it certainly simplified my life.

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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