Getting A True Diagnosis......

[Carolann1217]

Hello, I am a new member and have so many questions I really don't know where to

start. For one thing, I have had many of the symptoms of Celiac for many years.

It goes back to pregnancy 14 years ago. I had major platelet problems during

pregnancy and child birth....then within a year was diagnosed lactose

intolerant. From there, I can't remember ever really feeling good again. I just

thought it was due to the change in my body but I developed all kinds of stomach

pains, seemed like no matter what I ate never really sat right. In addition I

developed all kinds of allergies and Asthma! Anyway.... fast forward about 11

years or so and I decided to try the Atkins diet to drop 10 pounds before a

vacation. Well... I felt GREAT! I couldn't believe it. I haven't felt so good in

years. I continued with the low carb diet for the next 2 years, "cheating" on

weekends but being very good during the week. I never felt great when I would

cheat....but in my head thought it was worth it and!

it was probably just due to my body not being used to the carbs anymore.

Anyway... to try to make a long story short... even cheating only on weekends

was still making me wonder about other symptoms. I have ITP an autoimmune

disease of low platelets, in addition I am 36 and have very low bone density, I

also have MANY of the stomach symptoms listed on all the sites for Celiac. So...

not only all that, but my mother has ALL THE SAME THINGS. Not so much the gut

issues, but the low bone density and the ITP, which is very unusual. So, we

decided to have the blood work done. Her's came out positive, but mine was

negative. I believe it was mainly due to my low carb diet for the past 2 years.

I wasn't consuming a normal amount of gluten when I had the blood work done, I

was still on the low carb diet and only had the occasional weekend cheat.... so,

my doctor has recommended the biopsy. Due to the fact that my mother has tested

positive through the blood test and I have so many s!

ymptoms. My question/problem is.... he told me to eat a "regular" diet

for 6 weeks before the test. First of all, what is regular???? I have read so

many things, some say a minimum of 2 slices of bread a day, others say 4. Some

say minimum of 6 weeks others say 12. My fear is that I will have the test done

and it will come back negative due to the fact that it hasn't caused enough

damage in the amount of time he has given me. Unfortunately, I can NOT handle

eating this way for longer than the 6 weeks. I'm counting down the days at this

point...... it has made me feel awful 24 hours a day. Since I can never give my

body a break for a day, I never feel good. I am so bloated, have neck and back

pain, major stomach pain and almost a feeling of MSG...not sure if anyone can

relate...but kind of heart racing kind of feeling. I'm looking for opinions from

any of you that have been through the gluten challenge that can help me through

this. I'm worried that if the test is negative....that's it and I won't really

ever know. Have any of you been through !

it and if so... how long did you eat the gluten products before your biopsy?

And did it come back positive? I truly believe I have Celiac......... but I am

one of those people that would really like an official diagnosis. Please

help......

[kabowman]

First, welcome - glad you are finding all this out...now, I went off gluten on the advise of sereral nurse practitioners and nurse friends who suggested gluten could be part of my problem THEN I went in to see the docs to tell them what I found (I actually got rid of the doc I had had for 10+ years because she said it was just an allergy I developed and move on, so I did, to a new doc who understands food intolerances and was willing to listen). I refused to go back on gluten for any testing but that was my choice.

The doc scheduled a EDG for a biopsy which was negative but I had been gluten-free for over 3 months and low gluten for about a year before that for Adkins.

I wondered in the beginning about needing the official DX, now I don't care - I am just so glad about how much better I feel and how much better I am. However, it was a personal choice - I chose NOT to eat gluten for the test. I think others here did because of the offical DX.

My onset was when my ex sued for custody of our two boys - he lost after 2 years & $28,000 later with lawyers and courts and judges and nothing changed.

[Matilda]

..

[tarnalberry]

So if the blood test is negative, you're going to ignore the very positive results from your dietary test? The gluten challenge itself IS a valid diagnostic test. 6 weeks is probably a little too little, but possibly not since you've been cheating *every* weekend. Give it a chance, do your tests, and go from there. Regardless, assuming you have the blood tests scheduled, I would try the gluten-free diet - strictly! - once you take the tests (including the biopsy if you are going to do it; don't go gluten-free until you do the biopsy).