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Maybe I do, Maybe I don’t have celiac

pokey449
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pokey449 Enthusiast
pokey449
Posted

I’ve had blood tests and biopsy looking for celiac. The blood test was negative which I understand doesn’t mean I don’t have celiac. The biopsy showed mild villi blunting which I understand can be caused by things other than celiac. Earlier this summer I had bloating cramping gas nausea and was diagnosed with SIBO. I had two rounds of antibiotics and the 2nd time knocked the SIBO back. I’m not having any bloating or cramping now. No diarrhea or constipation. My other sxs is fatigue/malaise but no other celiac sxs. However I keep having nausea which my GI doc thinks is due to me going off my PPI that I was on for 17 years. So, I have no idea if I have celiac or not and the only thing I know to do is try a gluten free diet and see if I start feel better 

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raspberryfirecracker Contributor
raspberryfirecracker
Posted

Whatever you have, I hope your body can recover from the damage it's already caused, and that you won't sustain more.

pokey449 Enthusiast
pokey449
Posted
  • Author
23 minutes ago, raspberryfirecracker said:

Whatever you have, I hope your body can recover from the damage it's already caused, and that you won't sustain more.

Me too. Thank you. 

GFinDC Veteran
GFinDC
Posted

That's a good plan Pokey.  Just be patient as going gluten-free is not an instant cure.  If it was they'd sell it in pills at the pharmacy! ;) 

Some other things you should consider dropping from your diet IMHO are:

Sugar/carby foods.

dairy

soy

oats

You can always add these foods back to your diet one per week after 6 months to see if they affect you.

pokey449 Enthusiast
pokey449
Posted
  • Author
28 minutes ago, GFinDC said:

That's a good plan Pokey.  Just be patient as going gluten-free is not an instant cure.  If it was they'd sell it in pills at the pharmacy! ;) 

Some other things you should consider dropping from your diet IMHO are:

Sugar/carby foods.

dairy

soy

oats

You can always add these foods back to your diet one per week after 6 months to see if they affect you.

Thanks GFnDC. I’m already on a low FODMAP diet and have dropped off those sugars and dairy. gluten-free soy sauce does not seem to bother me. I made the switch to certified gluten-free oatmeal and so far that seems ok. In fact soon after I went to the gluten-free oatmeal I seemed to start feeling better. As far as I know?? the regular run of the mill oatmeal was the only gluten laced food in my diet as I’ve cut out other sources that I know of. I’m reading labels more closely. This is a major learning process 

pokey449 Enthusiast
pokey449
Posted
  • Author
On 2/6/2021 at 3:25 PM, pokey449 said:

Thanks GFnDC. I’m already on a low FODMAP diet and have dropped off those sugars and dairy. gluten-free soy sauce does not seem to bother me. I made the switch to certified gluten-free oatmeal and so far that seems ok. In fact soon after I went to the gluten-free oatmeal I seemed to start feeling better. As far as I know?? the regular run of the mill oatmeal was the only gluten laced food in my diet as I’ve cut out other sources that I know of. I’m reading labels more closely. This is a major learning process 

OK my 2 blood tests are negative, but my biopsy showed mild villi blunting. I've gotten no clear guidance from my GI doctor one way or another, other than his nurse saying the blood tests were negative for celiac. I'd like to definitively know if I have celiac or not. Are there other tests I could have that for sure will tell me if I do/don't have it???

pokey449 Enthusiast
pokey449
Posted
  • Author

OK my 2 blood tests are negative, but my biopsy showed mild villi blunting. I've gotten no clear guidance from my GI doctor one way or another, other than his nurse saying the blood tests were negative for celiac. I'd like to definitively know if I have celiac or not. Are there other tests I could have that for sure will tell me if I do/don't have it???

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Scott Adams Grand Master
Scott Adams
Posted

When you say your blood tests were negative, can you share your values, and the range? Sometimes people have high values that are just below the cut off, and combined with mild villi blunting, your ongoing symptoms, and the fact you were on PPI's for so many years, to me those exact levels would be important. At the very least you may have non-celiac gluten sensitivity.

pokey449 Enthusiast
pokey449
Posted
  • Author

IGA  was 327mg/dL and TTG/IGA   was 0.4U/L 

Scott Adams Grand Master
Scott Adams
Posted

Great, but do you happen to also have the scale/cut off for a positive reading? Each lab is different, so knowing this would be helpful.

pokey449 Enthusiast
pokey449
Posted
  • Author
3 hours ago, Scott Adams said:

When you say your blood tests were negative, can you share your values, and the range? Sometimes people have high values that are just below the cut off, and combined with mild villi blunting, your ongoing symptoms, and the fact you were on PPI's for so many years, to me those exact levels would be important. At the very least you may have non-celiac gluten sensitivity.

My results for both blood tests were well within the normal range for both tests. I’m a former biomedical research technologist so I’m pretty sure I didn’t misread the results and normal ranges. 

Scott Adams Grand Master
Scott Adams
Posted

Just keep in mind that only around 1% of people have celiac disease, but ~10% have non-celiac gluten sensitivity, and there is currently no screening for it.

pokey449 Enthusiast
pokey449
Posted
  • Author

Scott. Yeh I recall seeing #s like that on having celiac v gluten sensitivity. And as I understand one can have villi blunting for reasons other than celiac and not be gluten sensitive??? Would being on a PPI for 17 years cause blunting? How about having had SIBO? At this point I’m not sure what to do??? Do I assume I have celiac or gluten sensitivity and go gluten free for a period of time and see if I improve then test it with injesting gluten. Stay gluten free?? Don’t stay gluten free and see what happens?? 

Scott Adams Grand Master
Scott Adams
Posted

While there are other causes of villi blunting, the most common cause is probably still gluten, although there isn't a lot of research that compares the rates of villi blunting and their causes. We just did this article on this topic:

 One angle for you might be to go gluten-free for several months, and see if your doctor is willing to do another biopsy to see if the condition improves. If it does improve, then you likely have your answer.

pokey449 Enthusiast
pokey449
Posted
  • Author

I’ll consider that approach 

Placey09 Newbie
Placey09
Posted

Another thought- when doing your elimination diet- did you try eliminating egg for the 14 days?  I ask because ten years ago my doctor had me do an elimination diet to determine what might be causing my ' IBS' , well egg was the major cause ( or so I thought it's one of the two- gluten being the  other). Silly me didn't think to eliminate bread/ gluten  afterwards because I was feeling better- not 100% but better. Plus I'm French why would I eliminate bread lol! Then just this year after a neurologist tested me for Celiac's as well as other things ( I had a mini stroke last yr and have unexplained numbness) discovered I have Celiac's along with many vitamin deficiencies. My Dr was puzzled as she thought I had eliminated bread - yes I had  symptoms so should have followed up with her again but was a bit embarrassed by symptoms and never seemed to have the time since my children were young then. Bottom line try eliminating eggs- I had the same symptoms as with my Celiac's. Worse with gluten but egg intolerance is very similar reaction.

pokey449 Enthusiast
pokey449
Posted
  • Author

Placey. Eggs don’t seem to bother me. I’ve been in a low FODMAP diet for 6 months and I thought gluten free as well except I just recently learned the oatmeal I was eating probably wasn’t gluten free so I switched to certified gluten free oatmeal. Sxs have improved though I still have some nausea but then I have had dyspepsia for years. I got off the PPI I’d been on for 17 years when I was diagnosed with SIBO this summer. I got the SIBO knocked back but kept having major nausea. My GI doc thought it was the return of my dyspepsia so  put me on famotidine. About the same time I started the famotidine I changed to the gluten free oatmeal. Hard to tell which helped improve my sxs. However I’m still having some nausea, but much improved It’s really hard to sort out all the cause-affect  aspects of all this GI distress: SIBO, gluten, dyspepsia, PPIs, diet etc. All I can say is my sxs are way better than they were 6 months ago but still not totally symptom free. I’ll keep working at it. Had a CT scan of my abdomen yesterday. No nasty findings thankful. Some diverticulosis but I’ve known about that for some time. At least I don’t have diverticulitis 

Wheatwacked Veteran
Wheatwacked
Posted

"The truth is, restoring normal stomach function after extended PPI treatment is a rocky affair marked by successes and setbacks. "The Challenges and Pitfalls of PPI Withdrawal | The Lifestyle Matrix. It seems that getting off long term PPI use is as difficult as getting off prednisone.

pokey449 Enthusiast
pokey449
Posted
  • Author

Wheatwacked. I read the article you referenced. I think I had read it before. It like other articles I’ve read regarding weaning off PPIs continue to baffle me. All of them talk about taking your PPI every other day or so intermingled with taking H2 antagonists and spread out your PPI dose more and more. Such a protocol is difficult for most people. I had my PPI compounded into a liquid form so I could make small cuts every so many days. I decreased my dose by 2mg every 4-5 days. I took 2 months to get off 30mg of lansoprazole(Prevacid). I had no rebound doing it this way. My problem is the dyspepsia came back after 5 months time causing nausea day & night and thus I ended up back on famotidine. The nausea has been greatly reduced though I have to be careful of what I eat. A cup of coffee can fire things up- the hardest thing for me to give up.  Hopefully I’m going to eventually get everything calmed down and get off the famotidine as well. It’s all a struggle but I think I’m slowly getting ahead of it. 

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      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
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      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
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