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KayM

Diagnosis Confusion

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Hello all I thought Id write in for some advise. I have been gluten free for a year. I know that means I am unable to be tested so here I am I feel great. I arrived at this by totally going on fresh foods veg fruit and meat. once I was feeling good again I begain to add back well bread and pasta and all that brought me right back to yuck. so I heard about Gluten issues and started reading and decided to try and Im doing great. I am also dairy free, nut free, and no citric acid. for some reason bannanas and cucumbers are bad too. So now I only struggle with some brain fog and vertigo. on those days though I feel I may be having sugar lows Ive never been high but it just for some reason feels like a sudden drop. I am not sure how to handle it.

 

My doctor sais I can still do the genetic test and it will give them something to go on. but insurance sais no. My dad is currently being tested for celiac so hopefully that will give us some clues too. 

 

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It can be very difficult finding a diagnosis after being gluten free for so long, especially if you are unwilling to do a gluten challenge (I do not blame you for not wanting to do that). The familial link can definitely give you more pieces to the puzzle but not necessarily a positive or negative. There are many here that just consider themselves Celiac and don't worry about official diagnosis.


Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator

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I'm in a similar situation. I may eventually pay for the genetic OOP, just to satisfy some curiosity, but I know that I can never, in good conscience, do any type of gluten challenge, based on the results of my only challenge that I've tried to do. I've been gluten-free for over 4 years, I can only imagine what a disaster a gluten challenge would be at this point! If they ever develop testing that doesn't require a gluten challenge, though, I'll be one of the first in line to try it.

 

The main thing is, if you've decided to forgo celiac testing, make sure that you treat it like celiac and be just as careful as a celiac would.

 

Clean your house out of old scratched up pots and pans that can't be thoroughly cleaned, put your cast iron pans in a self clean oven and then reason, replace scratched plastic utensils, and all wooden utensils, old cookie sheets, etc. Make sure that you take care whenever going out of the house as well, in regards to eating at friends and family members, and ordering at restaurants. 

 

Good luck!


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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I too am thinking of just paying for the genetic test but with everything that I have come through I don't want to do a gluten challenge. Thanks so much for the advise I at least feel better knowing there are other self diagnosed out there. I wish I had known before I went gluten free about all the testing but I had no Idea I just wanted to feel better.

I am really carful but I  am gluten free my husband is not so at this point we have a split kitchen I have my dishes and cooking stuff and he has his its a little crazy but we make it work. Going out is especially rough we are in an area where gluten free is beginning to be and issue so more places are starting to understand but mostly I got to fend for myself.

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I was diagnosed last year, but my husband went gluten-free 13 years ago at the advice of his GP and my allergist. There is no way he will ever do a challenge at this point. He knows that gluten makes him very sick. Though he says that I have fared much better in terms of support from medical and family.

The kitchen is my domain and I prepare all the food, so I managed to keep him safe. All meals together were gluten free for years. Gluten is consumed outside of the house. It is nice to not have to watch or worry about eating a sandwich in front of you. He would get glutened outside the house though. We have found a few safe places to eat and our families accommodate us, but I typically host most everything or my Mom does. He helped pave the way for my transition.

Best bet, just tell everyone you have celiac disease.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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It is a tough situation.

 

Having an official diagnosis can be helpful if you need medical treatment of some sort later on that may be related to it because of how insurance works. At the same time, no mentally healthy person wants to make themselves sick.

 

It might be best to just act like you have celiac and so long as you are symptom free on a gluten diet, let it be.


Abdominal Pain/GI symptoms started= ~01/02/2014

Gallbladder out= 02/20/14

tTG IgA Postive= 03/21/14

DX via Biopsy (Marsh 3b)= 04/21/14

Celiac Antibodies within Normal range(Gluten free diet)= 10/23/2014

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Hi KayM -

 

The genetic tests don't actually tell you much.  Approximately 30% of the population have at least one of the two known Celiac genes even though only about 1% of the population actually gets the disease.  There have also been folks who have tested negative for either of the 2 known genes and were still diagnosed with Celiac via blood test and/or biopsy.

 

In my opinion, if going back to eating gluten made symptoms reappear and those same symptoms went away again when you went gluten free again, then you know you have an issue with gluten.  You don't know if it's Celiac or non-Celiac gluten intolerance but you know it's something you can't eat.  Period.

 

If you still have a few lingering symptoms, first make sure you are not still getting small amounts of gluten from somewhere unexpected.  Re-check all of your labels on everything.  If you are sure you're not ingesting gluten (to include by cross-contamination) and you think your remaining symptoms may be low blood sugar related, try making sure you get protein every 2 - 3 hours during the day.  You don't have to have had high blood sugar to have low blood sugar. 

I used to get low blood sugar all the time - doctors just told me that I'd be diabetic one day and until then they couldn't help me.  Idiots.  Anyhow - regular intake of protein and monitoring your sugar intake can nip it in the bud.  Be careful of sugary foods that are high in natural sugars too - like fruit.  To this day I can't eat fruit by itself without feeling crappy.  Always eat some protein with it to help balance it out.


Diagnosed at age 42.

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013

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Hi KayM -

 

The genetic tests don't actually tell you much.  Approximately 30% of the population have at least one of the two known Celiac genes even though only about 1% of the population actually gets the disease.  There have also been folks who have tested negative for either of the 2 known genes and were still diagnosed with Celiac via blood test and/or biopsy.

 

In my opinion, if going back to eating gluten made symptoms reappear and those same symptoms went away again when you went gluten free again, then you know you have an issue with gluten.  You don't know if it's Celiac or non-Celiac gluten intolerance but you know it's something you can't eat.  Period.

 

If you still have a few lingering symptoms, first make sure you are not still getting small amounts of gluten from somewhere unexpected.  Re-check all of your labels on everything.  If you are sure you're not ingesting gluten (to include by cross-contamination) and you think your remaining symptoms may be low blood sugar related, try making sure you get protein every 2 - 3 hours during the day.  You don't have to have had high blood sugar to have low blood sugar. 

I used to get low blood sugar all the time - doctors just told me that I'd be diabetic one day and until then they couldn't help me.  Idiots.  Anyhow - regular intake of protein and monitoring your sugar intake can nip it in the bud.  Be careful of sugary foods that are high in natural sugars too - like fruit.  To this day I can't eat fruit by itself without feeling crappy.  Always eat some protein with it to help balance it out.

This is good to know, I know I get really sick if I eat gluten I did just go through my food and found a few mistakes I had made. I have begun monitering my sugar to see if thats the issue and I am trying to do more protien it seems to help. I do find that I cant eat just fruit and candy has to be very small amounts or I feel awful. I believe Im on the right track and I do feel so much better no pain is awsome! So I will keep to it . Thanks so much for your input it helps so much to be able to talk to others who actually know what Im going through.

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