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Tall one

Gluten free and still sick

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I was diagnosed 10 yrs ago with Celiac disease.  It was a tough road going gluten/celiac diet.  I did it though.  But still......

I get these attacks, don't know what else to call them, 1 or 2 times a year where my bowels want to empty and then I get severe lower abdominal/back pain.  This pain is so intense it makes me vomit.  The vomiting does not stop until the pain stops. I end up in emergency as I become very dehydrated.  I have been told it could be: scar tissue, viral infection, food poisoning etc.  Last July I was back in emergency and I was told it was my appendix.  Had that removed and the surgeon said I had several attacks because the appendix was so scarred.  Finally they had figured this out.  I have been back to emergency 7 times since the appendectomy.  I have had CT scans, ultra sounds and X-rays. Nothing shows up.  My blood work shows my alt phos, glucose sugars, WBC are elevated every time but not enough to worry anyone.  When I go to emergency they give me IV, anti nausea meds and pain killers. Once my pain is managed I am sent home.  I saw a gastric specialist yesterday and she wanted my anti Tgg levels checked.  These were checked in Feb of this year (25.5)  yesterday my levels were 31.2.  This is not food related.  I am also on a FodMap diet (March 2017) due to abdominal bloating and pain.  I have lost over 50 lbs in the last 5 months.  I have basically been in bed for the last 16 months and I am not getting better but worse.

Anybody out there going through the same or have any ideas where to go from here?

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3 hours ago, Tall one said:

I was diagnosed 10 yrs ago with Celiac disease.  It was a tough road going gluten/celiac diet.  I did it though.  But still......

I get these attacks, don't know what else to call them, 1 or 2 times a year where my bowels want to empty and then I get severe lower abdominal/back pain.  This pain is so intense it makes me vomit.  The vomiting does not stop until the pain stops. I end up in emergency as I become very dehydrated.  I have been told it could be: scar tissue, viral infection, food poisoning etc.  Last July I was back in emergency and I was told it was my appendix.  Had that removed and the surgeon said I had several attacks because the appendix was so scarred.  Finally they had figured this out.  I have been back to emergency 7 times since the appendectomy.  I have had CT scans, ultra sounds and X-rays. Nothing shows up.  My blood work shows my alt phos, glucose sugars, WBC are elevated every time but not enough to worry anyone.  When I go to emergency they give me IV, anti nausea meds and pain killers. Once my pain is managed I am sent home.  I saw a gastric specialist yesterday and she wanted my anti Tgg levels checked.  These were checked in Feb of this year (25.5)  yesterday my levels were 31.2.  This is not food related.  I am also on a FodMap diet (March 2017) due to abdominal bloating and pain.  I have lost over 50 lbs in the last 5 months.  I have basically been in bed for the last 16 months and I am not getting better but worse.

Anybody out there going through the same or have any ideas where to go from here?

Going on a random uninformed tangent here, but people keep on saying fructans also cause celiac/gluten intolerance symptoms in some people. I know I get D, bleeding, and gas from carbs, and sugars that trigger my ulcerative colitis to flare, but this would have no relation to you since you do not have UC. Enzymes are another factor that have come to light, but you do not seem to have consistent issues with the symptoms of this, but again another thing you might consider since your grasping at straws.

Diet wise, I swear by the keto diet as a almost universal fixer for everything, I just love how much better I am doing once I removed all grains, fruits, starchy veggies, and carbs in general from my diet. Got rid of bloating, gas, pain, and I feel like the juggernaut. But with all your issues this might not be for you. Mine is also a bit of a modification on the keto diet, as I can not eat meat in but the tiniest amounts. and use nuts/seeds for my fat and giving me a really high fiber diet.

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Have you been checked for vitamin deficiencies?  Niacin (B3) or thiamine (B1) deficiency will cause gastrointestinal symptoms like you described.  Celiac Disease causes malabsorption which results in malnutrition.  Many Celiacs develop nutritional deficiencies even on a gluten free diet.  Doctors easily overlook vitamin and mineral deficiencies because they haven't seen them first hand.  They are in the mindset of writing prescriptions and removing body parts.  

You may have something in your diet that might be causing problems such as corn, soy, nightshades, or dairy.  A food diary might help pinpoint the culprit.  

Deficiencies in Vitamins D and A, vitamin B12, niacin, thiamine, zinc, calcium, magnesium, iron and folate are  the most commonly deficient nutrients.  Hope you can get them checked, if only to rule nutritional deficiencies out.  

Hope this helps.

 

 

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On 2017-11-30 at 4:37 AM, Ennis_TX said:

Going on a random uninformed tangent here, but people keep on saying fructans also cause celiac/gluten intolerance symptoms in some people. I know I get D, bleeding, and gas from carbs, and sugars that trigger my ulcerative colitis to flare, but this would have no relation to you since you do not have UC. Enzymes are another factor that have come to light, but you do not seem to have consistent issues with the symptoms of this, but again another thing you might consider since your grasping at straws.

Diet wise, I swear by the keto diet as a almost universal fixer for everything, I just love how much better I am doing once I removed all grains, fruits, starchy veggies, and carbs in general from my diet. Got rid of bloating, gas, pain, and I feel like the juggernaut. But with all your issues this might not be for you. Mine is also a bit of a modification on the keto diet, as I can not eat meat in but the tiniest amounts. and use nuts/seeds for my fat and giving me a really high fiber diet.

Thanks Ennis and Knitty Kitty.  Sorry for my late reply but I was back in emergency 2 days ago. Same old same old.  The hospital does not listen to me.  I was asked when my last bowel movement was and I told them I had only one as I am barely eating and my system was completely clean out from the last attack.  They were convinced that I was constipated and this was giving me my pain.  So on comes the enama.  They were all surprised that there was not more fecal matter after enama???  Back to banging my head again.

The FodMap diet did help with bloating.  I will look up Keto diet to see if this can help.  Will check with gastrologist. My vitamin levels are good?

While I was at the hospital I asked if the could do a fecal matter test for bacteria but was told that was my gastrologist specialty and she should run those test?  Silly me, I just thought while I was there, they could do the test as there is a lab at the hospital.  The ER doctor did not know what Tgg level was, when I explained my levels did rise since last test. 

Wish me luck in this battle because I need it.

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http://www.thepatientceliac.com/tag/mast-cell-activation-syndrome-and-celiac/

Here's an article or two on Mast Cell Activation Syndrome.  It explains how some foods cause a release of histamine but they overreact and cause all sorts of problems.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

AutoImmune Protocol Paleo diet is also very helpful.

http://www.saragottfriedmd.com/is-the-autoimmune-protocol-necessary/

https://ultimatepaleoguide.com/autoimmune-protocol/

I felt so much better after following the AutoImmune Protocol paleo diet.  The AIP diet and the Fodmaps diet both allow broccoli, cabbage, and cauliflower, which are all cruciferous vegetables and notorious for producing abundant gas and bloating.  I could never understand why they were included when they produce so much flatulence.  Suggest you cut those out for a while, also anything fermented (sauerkraut,pickles, olives) or cured (ham, smoked salmon).  

And get your vitamin and mineral levels checked for deficiencies!  Zinc deficiency, B12 deficiency, and vitamin D deficiency can all cause diarrhea.  And these are all commonly deficient in Celiacs. 

Hope you feel better soon!

 

 

 

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Did the GI offer an endoscopy?  You should be checked for refractory celiac disease, especially if you are confident that gluten is not getting into your diet.  An elevated TTG can be attributed to other autoimmune issues like Crohn’s.  SIBO and cancer should be ruled out too.  Before doing so, ask for the complete celiac panel.  If the DGP is elevated it could point the cause to gluten in your diet.  Still, an endoscopy might be your best bet.  

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