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mom2alex

Still Suffering Stomach Pains

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Hello everyone. We are new to the diagnosis. I have a 22 year old son with Down syndrome.  We have been dealing with stomach issues for about 5 years.  I requested on our last dr visit to have him tested for celiac since he has lost a lot of weight and although eating isn't gaining it back.  The blood test came back positive 2 months ago.  We had a visit with the GI dr 2 weeks ago and have an endoscopy scheduled for next week. 

 

I had heard it was important not to stop the gluten until the endoscopy but his dr said it was ok to stop.  So I have put him on gluten free diet, its been a week. He is still tired all the time.  But what worries me is today he called me at work with such severe pains. The same ones we have had over the past years on and off.  Its in his abdomin and radiates to his right side. 

 

I know the endoscopy will tell us if there is anything else going on but the celiac.  I had really hoped this was the cause and the diet change would help...But gluten free for a week, why the pains today?

 

Thanks for listening, I am still a bit overwhelmed. 

 

 

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It can takes months to heal.  It could be another cause. He could have eaten something he didn't realize had gluten (happens a lot in the beginning).

 

Is your doctor willing to diagnose him as having Celiac with a negative biopsy?  If not, I would put him back on gluten until the endo is finished.  Maybe they could do a colonoscopy at the same time to check for other issues and save you a trip?

 

 

http://www.cureceliacdisease.org/archives/faq/how-much-gluten-should-be-consumed-prior-to-being-screened-for-celiac-disease

 

How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional.

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While it is best to continue to eat gluten until after the endoscopy, and everyone is different, just wanted to share my experience.  I was gluten-free for three weeks prior to the endoscopy and my biopsy still showed moderate to severe villi damage.  And I didn't even have any obvious symptoms before my diagnosis.  I'm not saying this is the case for everyone, but villi damage does not go away quickly.

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Hi MomtoAlex,

 

Going gluten-free is not an instant fix to the digestive issues.  Pain can last for months afterwards in some people.  Or it can go away fairly quickly in others.  We aren't all the same and there is a great deal of variability in healing rates and how strictly people adhere to the gluten-free diet too.  If you think of the gut damage like a scraped knee, it can be easier to understand.  If you rubbed a chunk of broccoli across a raw piece of knee, it would hurt.  Or a chunk of steak or a hot pepper.   It's the irritation that causes the pain.  As the gut starts healing many changes are taking pace in the gut flora also.  People sometimes get very bloated and that can cause pain in an irritated gut.  Or spasms can occur in the gut also.  Also it seems that many people who go gluten-free report being more sensitive to gluten after being off it for a little while.  So even tiny amounts can then cause reactions.  A crumb is all it takes to cause the immune system to gear up for a major auto-immune attack on the gut.  And the immune system doesn't stop attacking the day after you ate gluten.  The antibodies slowly reduce over a period of time, most likely weeks to months.  gluten-free isn't the type of diet you can cheat on occasionally.  At least not without consequences.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/gluten-free/topic/81858-whats-for-breakfast-today/

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Also, there is a very nasty stomach bug going around right now that includes "double you over" pains.

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