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Diverticulitis or Celiac Flare

ktyler44

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ktyler44 Contributor
ktyler44
Posted

I am so confused and don't know which way to turn now. This is rather lengthy, but please bear with me to get to my dilemma. Several years ago when I was having flares of stomach pain, my doctor originally thought maybe it was diverticulitis but no test was run at that time. I didn't think the symptoms matched up to that and took myself off gluten for awhile. All of my symptoms seemed to improve (I had other symptoms)  but without a diagnosis, I wasn't sure. So I asked the doctor about doing a blood test for Celiac. I was told to go back on gluten for the test but I was only back on it for a week or two when he did the test. Of course it came back negative. He had wanted me to have a screening colonoscopy anyway, so I asked him to do an endoscopy and biopsy at the same time. He did, but I found out afterwards that he only took one specimen and checked for H. pylori, not Celiac. The colonoscopy did show a couple of diverticula. So I took myself back off gluten but cheated from time to time. Then I would hurt, so I finally stayed off gluten. I got better over time and even have stopped having migraines. I changed doctors and my new doctor offered to test me, but I didn't want to go back on it for the test. We did do the gene test, which was positive. She made the diagnosis of Celiac based on that along with my symptoms and improvement by removing gluten. Here's why I'm confused. I recently thought I would like to do the challenge to get a definite diagnosis. I ate real bread and other things for 3 days in a row with no reaction. But then I got to thinking that maybe it was just because I had healed and I was afraid of causing new damage. So I stopped the challenge. Now a couple of weeks later, I've had the same stomach pain I used to get but haven't knowingly had any gluten. So could my problem really have been diverticulitis all along rather than Celiac? Should I go ahead and do the gluten challenge to be sure? I don't currently have insurance but I could probably pay for a blood test, just not an endoscopy.

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Ennis-TX Grand Master
Ennis-TX
Posted

This is a bit of a personal choice, you have genes and react badly to it. Some people will have the reaction in hours some withing days...weeks might be pushing it if you did it then stopped but do not quote me. The Gluten Challenge for the blood test takes 12 weeks of eating gluten, not much maybe a 1/2 slice of bread, few crackers, or a tsp of vital wheat gluten a day, you can try it at night and sleeping it off. You have to build up the antibodies and let them go from the gut to the blood stream which can take UP to 12 weeks sometimes less and heard of others showing positive at 8 weeks. Open Original Shared Link

I have UC and Celaic, might be my double whammy and random reactions to forms and the amounts I eat and why my reactions change SO much each time.

ktyler44 Contributor
ktyler44
Posted
  • Author

It's possible that I accidentally got glutened. We were traveling and ate out a couple of times, so that would have only been a couple of days which is pretty normal for me. But what really confused me is that I didn't react for those three days that I knowingly ate gluten but have reacted at other times when I have accidentally eaten gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted
6 hours ago, ktyler44 said:

It's possible that I accidentally got glutened. We were traveling and ate out a couple of times, so that would have only been a couple of days which is pretty normal for me. But what really confused me is that I didn't react for those three days that I knowingly ate gluten but have reacted at other times when I have accidentally eaten gluten.

Three days may not have beenlong enough to see a reaction. When I went through my doctor guided and prescribed elimination diet I had to add items back in for a week before I could consider them safe. He explained that it can take up to a week for an intolerance reaction to show up.  Even after diagnosis it takes 3 or 4 days for the GI reaction to show up in me after a glutening although other symptoms do appear more quickly (neuro related). I think that diverticuli can be associated with celiac, or at least they were in my case. A year before diagnosis I had a colonoscopy where the GI found 'the most extensive diverticuli he had ever seen'. He said the out pouching covered my entire large intestine where usually only a couple are found on the descending colon. Five years after I was finally diagnosed celiac a repeat scope found they were gone.  If you can tolerate a challenge you may want to do so for 2 to 3 months and then get tested. You don't have to eat a lot of gluten a serving a day should be enough.  Do be sure to let your doctor know if your reaction wakes you at night. That is a clear sign of celiac since according to my GI the 'IBS' diagnosis doesn't cause that to happen. Good luck with whatever you choose to do and if you do the challenge I hope you get clear answers. In the end though it is your reaction to cutting out gluten that matters the most.

ktyler44 Contributor
ktyler44
Posted
  • Author
3 hours ago, ravenwoodglass said:

Three days may not have beenlong enough to see a reaction. When I went through my doctor guided and prescribed elimination diet I had to add items back in for a week before I could consider them safe. He explained that it can take up to a week for an intolerance reaction to show up.  Even after diagnosis it takes 3 or 4 days for the GI reaction to show up in me after a glutening although other symptoms do appear more quickly (neuro related).

What I don't understand, though, is that I never did react after those three days. Yet, other times when I've only eaten a little by accident, I'm in pain for days. Also, how can I tell the difference if this is a diverticulitis flare or celiac flare? I always assumed these were from gluten. Now I'm not sure.

ravenwoodglass Mentor
ravenwoodglass
Posted
1 hour ago, ktyler44 said:

What I don't understand, though, is that I never did react after those three days. Yet, other times when I've only eaten a little by accident, I'm in pain for days. Also, how can I tell the difference if this is a diverticulitis flare or celiac flare? I always assumed these were from gluten. Now I'm not sure.

You should talk to your doctor to be sure but diverticulitis can be very serious and can require hospitalization and antibiotics.  Do you get any other reactions that you know for sure are gluten related? Some will get a headache, brain fog or mood issues that show up with a glutening that can help us tell the difference. Do you keep a food and symptom log? That can be helpful if seeing a pattern.  Since you had no symptoms after three days back on gluten maybe a challenge and testing might be wise so you can know for sure.

ktyler44 Contributor
ktyler44
Posted
  • Author
39 minutes ago, ravenwoodglass said:

You should talk to your doctor to be sure but diverticulitis can be very serious and can require hospitalization and antibiotics.  Do you get any other reactions that you know for sure are gluten related? 

I've never required antibiotics with these flares. It's digestive only with abdominal pain and constipation. It usually lasts 3-4 days and the pain is over the whole abdominal area.

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ravenwoodglass Mentor
ravenwoodglass
Posted
On 3/8/2018 at 9:34 AM, ktyler44 said:

I've never required antibiotics with these flares. It's digestive only with abdominal pain and constipation. It usually lasts 3-4 days and the pain is over the whole abdominal area.

IMHO you are dealing with a glutening. Diverticulitis would leave you very ill and running a fever. Most with that end up in the ER or at their doctors office. You say you have eaten out a couple of times so chances are you were glutened. Hope you are feeling better by now but if not a trip to the GI may be in order.

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