Author Topic: ? for those with Celiac  (Read 2545 times)

Liz D.

  • Hero Member
  • *****
  • Posts: 830
? for those with Celiac
« on: October 20, 2009, 06:25:01 AM »
Can you have celiac disease that only causes stomach pain and no diarrhea or intestinal issues?  I just had my endoscopy last week and he didn't say anything about celiac, just a bit of inflammation.  Wouldn't it be automatic that a GI doc would test for celiac during an endoscopy?

Liz D.
57 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 200 mg; Levoxyl 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Hormone Replacement Therapy, vitamins, calcium, flaxseed, biotin

ohiolady

  • Hero Member
  • *****
  • Posts: 2212
Re: ? for those with Celiac
« Reply #1 on: October 20, 2009, 06:54:08 AM »
I don't think it is automatic.  I was tested by my rhematologist with blood work and it came by negative.  You sound just like me.  Chronic stomach pain.  I gave up gluten for awile and could not tell the difference.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

Claire the Red

  • Guest
Re: ? for those with Celiac
« Reply #2 on: October 20, 2009, 08:31:01 AM »
I was tested for Celiac (blood test) by my family doc last year, and it came back negative. I also have gastritis (DX'd by endoscopy last fall). I am not a medical professional but I have a theory about this. In SS, your immune system attacks your mucus-producing exocrine glands, right? Well, there are also mucus-producing exocrine glands in your stomach. So, I am thinking my gastritis is basically autoimmune inflammation. I tried asking my GI doc about this but he didn't seem interested. He probably thinks I'm a crazy person asking all of these questions. If any of you medical people out there have feedback I'd love to hear it!
In any case, I have been staying off of gluten for a while to see if things improve. Good luck with your case!

Liz D.

  • Hero Member
  • *****
  • Posts: 830
Re: ? for those with Celiac
« Reply #3 on: October 20, 2009, 12:25:18 PM »
Anna and Claire,

From this post and the other one on Miralax, it sounds like we are all in the same boat.   Stomach pain, but no real answers.  We are all on reflux meds, had endoscopes and still are not pain free.  I do think it is just something we have to deal with having Sjogrens or any autoimmune stuff.  Very discouraging though.  At least we are in it together and can share our tales of woe . . . and possibly a solution!!  My next thing to try is papaya enzymes.  A friend mentioned it to me today.   I'll let you know.

Liz D.
57 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 200 mg; Levoxyl 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Hormone Replacement Therapy, vitamins, calcium, flaxseed, biotin

Seeker

  • Hero Member
  • *****
  • Posts: 604
  • Proud to serve
Re: ? for those with Celiac
« Reply #4 on: October 20, 2009, 12:44:06 PM »
G'day all, Celiac like Sjogren's is a very sneaky disease.  It can cause, diarrhea or constipation.  Gerd and bloating can be some of the other indicators.  Again like Sjogren's blood tests can be deceiving.  With sjogren's, if all else fails, a lip biopsy is done.  With Celiac, a biopsy of the small intestine is performed.  

You can go on a gluten free diet and see if your symptoms improve.  The down side of that is if you have been on a gluten Free diet for a while, your small intestine will heal.  So if your doctor does perform a biopsy it will come back normal.  Which means you must go off the gluten free diet in order for a biopsy to show that you have Celiac.  

Most people who have gone on the diet and have had an improvement in their symptoms will not go backward in order to have a biopsy.  The catch is, most doctors  will not believe you have Celiac unless you have the biopsy.  

You need to do a Google search and go on the Celiac foundation's web site and get more information.  

Seeker.
Every day is an adventure, waiting to happen.

ohiolady

  • Hero Member
  • *****
  • Posts: 2212
Re: ? for those with Celiac
« Reply #5 on: October 20, 2009, 01:22:12 PM »
I've had other testing regarding my stomach pain.  Mannometry and 24 PH testing.  My mannometry revealed a hypotensive LES valve.  Also, I have slight dysmotility where the esophagus meets the stomach.  Food gets hung up there for a little bit then drops in.  The doctor didn't make much of either of these.  I just wish the stomach pain would go away.  I do have periods of time where I do better than other times.  But, this has been going on for two years for me.

It sure takes the joy out of eating.

Anna
« Last Edit: October 31, 2009, 09:04:59 AM by ohiolady »
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

Billydude

  • Guest
Re: ? for those with Celiac
« Reply #6 on: October 30, 2009, 09:55:59 PM »
You can have Celiac for many years before it even starts to show any symptoms.    I was tested by blood test alone but given the fact that my mother and brother have celiac I was diagnosed with it as well.   Or,  gluten intolerance at least.