Celiac or Crohns ??

[Katya773]

For  years I have had weird symptoms like bad fatigue terrible anxiety tingling in toes, GERD bloating passing too much gas , sinusitis , feeling full , three years ago on a whim I went gluten-free. I felt fine , then a year ago I ate gluten and had horrible gas and diarrhea. Happened again with soy sauce. Fast forward to a month ago. I grew tired of being gluten-free and I never considered I’d have anything like Celiac. So a month ago I stated eating bread and for a few days it was fine then I had some diarrhea so I stopped. Then 3 weeks ago had some cookies and two zebra cakes .I had diarrhea for 3 weeks whenever I ate anything. It was awful! I work 11 hour mind you. Im fine now thankfully. went to my gastro. And she immediately had me tested for Crohns because my daughter has it. And sure enough  my ASCA antibody was positive which is seen in Crohns and sometimes Celiac. I also had a positive DQ2 and Homozygous for DQB1. My doctor is leaning towards Celiac. I have a endoscopy and colonoscopy but I am afraid to eat more gluten again. I did have a piece of bread two days ago and only had bad anxiety and some diarrhea. What do you guys think? 

[cyclinglady]

You could have both, but only a doctor can formally diagnose you.  

The genetic test just means that you have the possibility of developing celiac disease as about 35% of the population has these genes.  

Did you have an endoscopy or is one scheduled?  It might be worth is to get back on gluten free the two weeks prior to the endoscopy to obtain small intestinal biopsies.  It takes 8 to 12 weeks for the celiac blood tests.  

[Ennis-TX]

For the scopes you only have to be eating gluten daily for 2 weeks, so figure out when your supposed to take them and eat at least 1-2 slices of bread a day 2 weeks prior. BUT you should be warned if you are a celiac after going gluten free your immune system will attack much worse when reintroduced to gluten, so personal advice if your doing the testing is do not go gluten free yet.

[Katya773]

For  years I have had weird symptoms like bad fatigue terrible anxiety tingling in toes, GERD bloating passing too much gas , sinusitis , feeling full , three years ago on a whim I went gluten-free. I felt fine , then a year ago I ate gluten and had horrible gas and diarrhea. Happened again with soy sauce. Fast forward to a month ago. I grew tired of being gluten-free and I never considered I’d have anything like Celiac. So a month ago I stated eating bread and for a few days it was fine then I had some diarrhea so I stopped. Then 3 weeks ago had some cookies and two zebra cakes .I had diarrhea for 3 weeks whenever I ate anything. It was awful! I work 11 hour mind you. Im fine now thankfully. went to my gastro. And she immediately had me tested for Crohns because my daughter has it. And sure enough  my ASCA antibody was positive which is seen in Crohns and sometimes Celiac. I also had a positive DQ2 and Homozygous for DQB1. My doctor is leaning towards Celiac. I have a endoscopy and colonoscopy but I am afraid to eat more gluten again. I did have a piece of bread two days ago and only had bad anxiety and some diarrhea. What do you guys think? 

[Awol cast iron stomach]

3 hours ago, Ennis_TX said:

For the scopes you only have to be eating gluten daily for 2 weeks, so figure out when your supposed to take them and eat at least 1-2 slices of bread a day 2 weeks prior. BUT you should be warned if you are a celiac after going gluten free your immune system will attack much worse when reintroduced to gluten, so personal advice if your doing the testing is do not go gluten free yet.

"BUT you should be warned if you are a celiac after going gluten free your immune system will attack much worse when reintroduced to gluten,"

 

 yes- this! 

good luck with your testing  and welcome

[GFinDC]

21 hours ago, Katya773 said:

For  years I have had weird symptoms like bad fatigue terrible anxiety tingling in toes, GERD bloating passing too much gas , sinusitis , feeling full , three years ago on a whim I went gluten-free. I felt fine , then a year ago I ate gluten and had horrible gas and diarrhea. Happened again with soy sauce. Fast forward to a month ago. I grew tired of being gluten-free and I never considered I’d have anything like Celiac. So a month ago I stated eating bread and for a few days it was fine then I had some diarrhea so I stopped. Then 3 weeks ago had some cookies and two zebra cakes .I had diarrhea for 3 weeks whenever I ate anything. It was awful! I work 11 hour mind you. Im fine now thankfully. went to my gastro. And she immediately had me tested for Crohns because my daughter has it. And sure enough  my ASCA antibody was positive which is seen in Crohns and sometimes Celiac. I also had a positive DQ2 and Homozygous for DQB1. My doctor is leaning towards Celiac. I have a endoscopy and colonoscopy but I am afraid to eat more gluten again. I did have a piece of bread two days ago and only had bad anxiety and some diarrhea. What do you guys think? 

The endoscopy requires 2 weeks of eating gluten.  But the blood tests for celiac require 12 weeks of eating gluten.  You should also get your vitamin and mineral levels checked.  People with celiac are often low in B-12, copper, Vitamin D and other things.

[Katya773]

Ok thanks. Only had a metabolic panel . have a low vita D which I am now taking 50,000 IU of Vitamin D. Will ask my doctor to test my vitamin and mineral levels 

[Katya773]

On 7/25/2019 at 12:44 PM, Awol cast iron stomach said:

"BUT you should be warned if you are a celiac after going gluten free your immune system will attack much worse when reintroduced to gluten,"

 

 yes- this! 

good luck with your testing  and welcome

Thanks appreciate it   yes I am in a perpetual bloated  state right that is making eating so uncomfortable. Stopped gluten. I realize I needed to be eating it for my biopsy next week however I don’t think I can handle it 

[cyclinglady]

2 hours ago, Katya773 said:

Thanks appreciate it   yes I am in a perpetual bloated  state right that is making eating so uncomfortable. Stopped gluten. I realize I needed to be eating it for my biopsy next week however I don’t think I can handle it 

You HAVE to be consuming gluten for two weeks prior to an endoscopy.  Please let your GI know that you went gluten free.  If your biopsies come back negative, you would not be able to rule out celiac disease.   You have gone through so much.  What is another week or so?  

  If you can tough it out, I would stay on a full gluten diet.  Why?  Because without a diagnosis, you get less support from family, friends and medical.  Yes, you will get that “eye rolling” contemptuous look while trying to maintain a gluten free diet for life.  That happens ALL the time for my non-diagnosed hubby.  Me?  I get tons of support.  When I was diagnosed, I did not have any GI issues.  I ate wheat/gluten all the time.  I could have never guessed that I had celiac disease.  

Please research well and make informed decisions.  Consider yourself lucky that you have access to a GI who is willing to test you.  So many forum members have had to figure this out on their own and they would have jumped at the chance to get help and a diagnosis.  

[Katya773]

Thank you I I will try... my endoscopy is in 4 days and I already had 10 days of gluten. My GI doctor is a specialist in Celiac and he knows I stopped gluten. I just want to know what’s wrong but hard to do when I’m so uncomfortable. A co worker even asked if i was pregnant yesterday! Can’t fit into my clothes and full can’t barely eat. But I will eat more gluten for the next 4 days. Fingers crossed they can see something. Might be something else like Crohns. My daughter has it so there’s a chance I do too. 

[cyclinglady]

12 hours ago, Katya773 said:

Thank you I I will try... my endoscopy is in 4 days and I already had 10 days of gluten. My GI doctor is a specialist in Celiac and he knows I stopped gluten. I just want to know what’s wrong but hard to do when I’m so uncomfortable. A co worker even asked if i was pregnant yesterday! Can’t fit into my clothes and full can’t barely eat. But I will eat more gluten for the next 4 days. Fingers crossed they can see something. Might be something else like Crohns. My daughter has it so there’s a chance I do too. 

Just a slice or two of bread (or equivalent) is the recommendation.  You do not need to go overboard.   Hang in here!  Just four more days.  Wear loose clothing, but you already know that!  ?

My niece has Crohn’s, but no celiac.  I thought  for sure she had celiac disease, but it was firmly ruled out.  I do remind her that she could develop it later.  The same goes for me.  I could develop Crohn’s, lupus or RA (in addition to my Hashimoto’s and autoimmune gastritis).  Unfortunately our families are all riddled with autoimmune.  

Whatever the outcome, consider trialing a gluten-free non-processed diet or AIP (Autoimmune Paleo) diet for a while.  It may help with healing.  Check out the tiny tiny AIP study diet done by Scripps in San Diego,  they achieved a 78% remission rate for IBD patients.  Might be worth it for you or your daughter to try.   Eating a healthy, balanced, non-processed foods diet can not harm you, in my non-medical opinion.