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how does everyone deal with severity of gluten symptoms?

SandMer

By SandMer
in Coping with Celiac Disease

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SandMer Newbie
SandMer
Posted

Hey everyone, I'm pretty new to the site, I've read lots of stories though. My question is two parts really. I ate an apple yesterday that I had sitting in the console of my truck. About 45 minutes later I started getting the telltale pain in my side. Thinking back I remember my daughter left her poptart in the cup holder a couple weeks ago...could that have really been it? Is severity really that bad? My second question is, the pain I get is always my right side right around my  hip bone. The pain lasts about half an hour but is so bad I can hardly breathe, it feels like an ovarian cyst. Does this sound familiar to anyone? My symptoms follow the same path, pain, bloating, muscles hurt, head ache, cold like symptoms, severe rash just to name a few.

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chocominties Rookie
chocominties
Posted

It is entirely possible that your apple touched residue from the pop tart and caused your symptoms.  Right after I "got better" but was still figuring things out I ordered a burger and removed the bun.  There was no visible residue on the burger.  I still had symptoms (albeit mild ones) after.  A crumb, even an invisible one, can be all it takes.  

That said, I never fare well with fruit and veg.  A few months ago I went on a diet where I replaced all my midday meals and snacks with raw fruits and vegetables.  Apples, carrots, celery, cucumber, etc.  I had to scale it back because every couple of days I would get horrible cramps and diarrhea.  I just do not tolerate fiber well at all.  But it's a bit better because a few years ago I couldn't even eat a single apple every day or I'd get the same thing.  (Still can't eat bananas though.  I might as well drink a bottle of Ex-Lax.)

I honestly can't say whether the pain you mention is necessarily gluten or not.  Personally, after years and years of intestinal inflammation, sometimes food just doesn't react well.  The only thing my body really agrees with 100% of the time is meat.  

GFinDC Veteran
GFinDC
Posted

Hi Sandmer,

It could be cc from the apple.  Remember we are talking about an immune system reaction.  The same immune system that attacks germs so small we can't see them with the naked eye.

Your symptoms are different than mine but that doesn't make them invalid,  There is massive variation in symptoms among celiacs.

Regarding the rash. have you read up on DH (dermatitis herpetiformis) ?  DH is a very itchy rash that people with celiac can get.  There is forum section dedicated to DH.

Welcome to the forum! :)

SandMer Newbie
SandMer
Posted
  • Author

Thank you both! I don't have much more then a diagnosis from my dr. It was basically a here's what you have, avoid gluten, good luck. So I'm learning all by myself. I have looked up the DH, and that's definitely what my rash is. I feel like I'm kind of alone in this, even though my family is amazing, I feel like such a burden. That will fade with time I suppose. Just have a hard time dealing with this. I bring food with me and even that has to be handled differently 

Ware96 Newbie
Ware96
Posted

Brand new to site do stomach pains flare up on and off for days after being glutenized?  My daughter is new to this , also type 1 diabetic with hashmotos to top it off just looking for answers and what is the best relief for the stomach pains 

cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, Ware96 said:

Brand new to site do stomach pains flare up on and off for days after being glutenized?  My daughter is new to this , also type 1 diabetic with hashmotos to top it off just looking for answers and what is the best relief for the stomach pains 

Welcome Ware96!

Everyone has different ways of coping with an accidental glutening.  For me, I try to cut back on activities and eat soft well-cooked (even fruit) foods that are easy to digest.  Think stews and soups.  Cut out all processed food as much as possible until you feel better.  I become temporarily lactose intolerant after a glutening too.  Frankly, eating anything can hurt!

Remember, celiac disease is like lupus, MS, RA, Hashi's, except we know the trigger for celiac disease -- gluten.  An exposure can cause a "flare-up" (your body starts attacking your small intestine) that can last for days, weeks, or months (it is about three months for me).  Each exposure can result in different responses, oddly enough.  

Read out Newbie 101 tips under the "Coping" section.  I think you will find it useful.  

We are here to help each other!  ?

GFinDC Veteran
GFinDC
Posted

Hi ware96,

I like Pepto Bismol for gut pain.  Also I drink peppermint tea when glutened and take aspirin.  Peppermint tea can help relax stomach muscles and get gas out.  I seldom drink it except when having digestion problems.

Lots of water can be helpful too.  Perhaps some Milk of Magnesia if needed.

Symptoms can vary a lot.  They may drag on for weeks to months after a glutening, but may not too.  It's literally a crap shoot! :)

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
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    • JoJo0611
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    • deanna1ynne
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