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Jaimashi

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Jaimashi Newbie
Jaimashi
Posted

gluten-free Food sold - thanks!

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KaitiUSA Enthusiast
KaitiUSA
Posted

How exactly were you misdiagnosed with celiac? Were blood tests or biopsies positive? How did they diagnose you to begin with?...if you get tests done that come back positive there is like a slim to none chance that they are wrong. Alot of doctors do not know alot about celiac disease to begin with.

celiac3270 Collaborator
celiac3270
Posted

Yea... how were you misdiagnosed? After all, a negative biopsy doesn't matter if you get positive blood results (there may be only patchy intestinal damage), a pos. biopsy, pos. blood would be a definite diagnosis...., I don't know how a doctor would diagnose a negative in both as celiac disease...... just interested, thanks!

Also, I don't use a lot of the stuff on the list, but for those who do and would be interested in buying your stuff, it might be helpful to list amounts. For example, one box of rice and shine or many?

Jaimashi Newbie
Jaimashi
Posted
  • Author

I'm not sure if misdiagnosed is the right word....perhaps too rapidly diagnosed? I had one blood test for the antibodies, which came back showing "strong antibodies." My doctor told me I wouldn't be showing antibodies unless I had it. She told me that she was diagnosing me as a Celiac, and I really didn't need any further testing unless I wanted to. I had done enough research on my own (mainly due to this AWESOME web site!!!) to know I wanted another opinion.

So she set me up for an appointment for a biopsy with an intestinal specialist, but they could not fit me in for over 3 months (??!!!). In order to be covered for insurance, I had to go to this specialist that she recommended, even with a 3-month wait. My doctor told me I needed to convert to living as a celiac immediately; so for 3+ months I struggled with it. But none of my symptoms went away - they actually just got worse.

Within two minutes of talking with the intestinal specialist, he laughed and said that no way am I a celiac candidate. He did all kinds of testing for his own little theories - mainly IBS-related stuff (and Celiac too) - all of which came back negative.

Exasperated, frustrated, broke, and still sick after one year of testing, I decided to take things into my own hands. After tons of research and self-experimentation, my overall diagnosis is this: I am severely lactose-intolerant (even more than I realized); I can't have soy; I can't have lettuce (as a Celiac, I was living on salads and still getting so sick); and I am very intolerant of MSG and other chemicals (which, by the way, are in EVERYTHING we eat). That's it! So I have a few food intolerances and can't eat the chemicals that we shouldn't be eating anyway; and yet not one doctor explored that as an option before proceeding into the more serious possibilities.

Today I am totally symptom-free, no longer sick, never have diarrhea, no longer have the headaches that have plagued me my entire life, I control my weight without problems, and feel incredible. All because of a few food and diet changes. I'm totally organic (our foods in America are saturated with chemicals) and practically a spokesperson for people to explore your own body through diet-related issues first, and to learn about the harm that chemicals in all our foods can be doing to you.

Of course, this is just a reply to your questions about how *I* was misdiagnosed - not a soapbox for everyone living with this challenging way of life. If you've been diagnosed, as you say, it's a pretty sure thing - but if anyone who is reading this has a misinformed doctor like mine (no longer my doctor, of course) and/or has had conflicting diagnosis, PLEASE explore your options, including a second (or third) opinion. Nobody knows your body like you.

Peace,

Stacy

plantime Contributor
plantime
Posted

When I get two conflicting opinions, I go for a third one. The first doc is right, you would not have antibodies without having celiac. The second is wrong, it is possible to have celiac, without having intestinal damage, especially if you went gluten-free several months before the biopsy. It is quite possible that you do have celiac, and other intolerances and allergies. My opinion is that you need to see a third doctor for another opinion.

KaitiUSA Enthusiast
KaitiUSA
Posted

You were gluten free before a biopsy? That will heal the damage. Your first doctor is right, I agree...you would have antibodies only if you have celiac. Your 2nd opinion must have been from one of the many doctors without knowledge of celiac disease.

Whether or not you have symptoms now is not an issue...many people do not have symptoms with celiac.

If you tried the diet but struggled with it your symptoms would not have gone away anyway. Some people don't have their symptoms go away for a long time and when eating gluten or having frequent accidents will delay the time for it.

I really think your first doctor was right and it is good he/she picked up on the celiac because not many doctors have that knowledge.

I would get a 3rd opinion of a person who knows alot about celiac.

I had doctors telling me it was all in my head...I finally found one who knew something about celiac....I don't know but it sounds like you may be in denial(which I went through) and then just wanted to go with the 2nd doctors opinion because you wanted it to be that way...I don't know you may or may not have celiac but with positive blood tests I would not write it off yet. Good luck :D

I was laughed at by 3 doctors but it took only the next one to diagnose me(the other 3 did not know about celiac) so when you go for other opinions make sure they know alot about celiac. Some doctors say "well you don't have this symptom so you can't be" or " you don't fit the classic celiac" and so forth..all of which are false

tarnalberry Community Regular
tarnalberry
Posted

I hate to agree with the bad news, but chances are, if you were gluten-free for three months prior to the biopsy, you got a false negative out of it. False positives on the blood tests are next to unheard of. (Also, lactose intolerance is highly correlated to celiac disease, as the lactase enzyme is produced at the tips of the villi - the part damaged first.) And I certainly don't doubt the other food intolerances you've described at all, but you might consider whether or not you're one of the asymptomatic celiacs.

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