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gluten-free for 2 years - TTG at 4 - still struggle with stomach problems

celiwhat

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celiwhat Rookie
celiwhat
Posted

I was diagnosed with celiac 2 years ago and since have been gluten-free. When I started my ttg was 88. I just recently visited the doc because I still seem to suffer from almost daily stomach pain. My ttg came back at 4. The doc suggested I try Metamucil and next week give lactaid a try as I still eat dairy. 

The metamucil I took one day and I had such bad stomach pain and loose bowel movements I felt too miserable to try it again. I haven't tried the lactaid yet but in the past I have and didn't see much difference. 

Heres the other thing: I do eat out a lot. I try to stick with safe places but every now and then I play the odds. So I usually manage to get sick once a month (lately it's been more)

so I went to the doc and had my ttg level tested to see if my body is still getting gluten and this is why I still feel horrible. But my levels came back at 4, so now I'm just wondering... what the heck? I'm feeling super discouraged and doomed to a life of unexplained stomach pain. 

 

The annoying part is all my dr did is give me the results. Like "oh you're continuing to improve." Ok, but I'm in paid so what's going on? No answers, ever. It seems like I get suggestions, but they never do anything and I'm so fed up with my body. I'm tired of waking up frequently wondering what I could have ate that is bothering me. I had no idea two years later I'd still be struggling. Lately the stomach pain has increased and it's daily now again. I've been taking pepto for it and it helps a bit, but I don't want to live life digging in my purse for pepto everyday.

 

any advice or suggestions from anyone who has been through this are appreciated. 

I get that celiac may not be the only problem but I don't know where to go anymore as I've been searching for 2 years.

 

 

 

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ravenwoodglass Mentor
ravenwoodglass
Posted

I had the same issue with stomach pain after diagnosis and it turned out to be soy protein that was causing it.  I never ate much soy before diagnosis and gluten was keeping me constantly ill so I never realized it was an issue till I stopped going with foods with soy on the suggestion of good freind. Not saying that is the problem with you but thought I would throw it out there as a possibility. If you are eating oats you may want to drop those for a bit also since some of us will react to those even if they are gluten free.

In addition is there any way you can avoid eating oput for a month or so? You may be getting glutened but not enough to show on the TtG. I could be wrong but I think the DGP tests are the preferred ones for checking with dietary compliance. You should also consider dropping dairy for a bit. Add it back in when you are feeling better starting with stuff like hard cheeses, yogurt and butter that have low amounts of lactose.

Hopefully you will be able to figure out what is going on soon and get some relief.

 

tessa25 Rising Star
tessa25
Posted

You could have the full celiac panel done to see if any other numbers come up high. TTG IGA and IGG, DGP IGA and IGG, EMA.

If your doctor is not a gastroenterologist then you can try going to one. They know what to test for.

You could also simplify your diet and start a food log. Gradually introduce foods and when stomach pains start you can see what you ate in the last two days to cause a problem.

 

celiac sharon Apprentice
celiac sharon
Posted

There has been a lot of controversy about probiotics, so I stopped taking mine. At first I felt no different, but over time I gradually had increased bloating and daily pain in the left upper abdomen, sometimes so bad it doubled me over.  I even had a cat scan to make sure I was okay ( I also have a history of diverticulitis). While doing some reading, I read yet another article about the microbiome and how celiacs have really poor gut bacteria and should be on a good probiotic. So I tested my probiotic with a home test kit to make sure it was gluten free, and lo and behold about a week later, bloating and pain were gone. Hasn't returned yet. Just something to consider

celiwhat Rookie
celiwhat
Posted
  • Author

I have tried probiotics on multiple occasions and I absolutely cannot tolerate the amount of pain I am in when I take them unfortunately :(

also my doc is a GI, sadly he's even a celiac specialist.

i should stop eating out for awhile. I just feel so left out and it's something I love to do, also like to have a drink out. But I was wondering if I could still be getting glutened and it not showing up on the test. 

Also, as far as dairy I just eat butter, hard cheese and yogurt.

a few months ago I started drinking coffee and I'm noticing the last few days after I drink coffee I start to feel stomach pain and nauseated. 

notme Experienced
notme
Posted
48 minutes ago, celiac sharon said:

There has been a lot of controversy about probiotics, so I stopped taking mine. At first I felt no different, but over time I gradually had increased bloating and daily pain in the left upper abdomen, sometimes so bad it doubled me over.  I even had a cat scan to make sure I was okay ( I also have a history of diverticulitis). While doing some reading, I read yet another article about the microbiome and how celiacs have really poor gut bacteria and should be on a good probiotic. So I tested my probiotic with a home test kit to make sure it was gluten free, and lo and behold about a week later, bloating and pain were gone. Hasn't returned yet. Just something to consider

i did exactly the same thing:  went off them because i was uncertain if they contained gluten.  (also, i stopped with the digestive enzymes for the same reason)  but lately, i am wanting to try them again.  what brand tested safe, if you don't mind me asking? 

celiac sharon Apprentice
celiac sharon
Posted

Trunature digestive probiotic is the one that helped me and tested negative with my home test kit. It does say gluten free on the box as well. At first I tried a recommended one called florajen, but it just was not as effective for me. I hear you are supposed to change your probiotics periodically, but I haven't had the nerve yet. ?  As long as my stomach is doing well, I'll leave well enough alone. Also, if you live near a Costco, I get it very reasonably there. 

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notme Experienced
notme
Posted

thank you :) i will look for it.  i was switching around ( culturelle, walgreens probiotic, walgreens probiotic with enzymes, just plain digestive enzymes) so, i know what you mean.  at that point, i couldn't tell what was messing with my gut and what wasn't bothering me.  ima try those, and *just* those and see how it goes.  thanx again!  :)

Feeneyja Collaborator
Feeneyja
Posted

You might want to have your GI test for SIBO. Similar gut symptoms, common in celiacs, often agrivated by probiotics because you are adding more microbes to the overgrowth (FYI, the overgrowth is typically good bacteria is the wrong place).  That's one of the next things they look for in a celiac still having symptoms.

Holycow Rookie
Holycow
Posted

VSL #3 is safe and powerful probiotic.  You get it at Costco in pharmacy or online.

Metamucil is too hard on my system too.  Psyllium husk is easier on the system and I tolerated it  a little better.   It did nothing for my husband because it was too gentle for him.

 

celiwhat Rookie
celiwhat
Posted
  • Author
1 hour ago, Feeneyja said:

You might want to have your GI test for SIBO. Similar gut symptoms, common in celiacs, often agrivated by probiotics because you are adding more microbes to the overgrowth (FYI, the overgrowth is typically good bacteria is the wrong place).  That's one of the next things they look for in a celiac still having symptoms.

I was never tested for it because the test was expensive and not covered by insurance, but my doc gave me xifaxin anyway. This was two years ago. I brought this up to the doc the other day and he said it's something we could try again but he doesn't know if throwing antibiotics all the time at me is a good thing. 

Feeneyja Collaborator
Feeneyja
Posted

My daughter was treated with antibiotics when first diagnosed with SIBO, but it came back and got worse over the year. Instead of xifaxin again (and because insurance wouldn't refer her back to the same doctor), I treated her with Atrantil, herbal antibiotics (oregano oil and garlic), plus diet low in fermentable carbs (SIBO specific diet) and she was WAY better than after xifaxin. FYI, it took two months of this treatment. When we finally got back to her GI (had to switch insurance providers), the doctor said we did a great job. She suggested staying lower in fermentable carbs, slowly increasing as tolerated, and when symptoms return or once a month do an herbal antibiotic. Apparently it has the tendency to be chronic in some people. So diet adjustments are important.  And for most folks, one course of antibiotics doesn't work  

Just our experiences. But I was shocked at how bad the SIBO could be. 

Here's good resource:

Open Original Shared Link

Rob E. Newbie
Rob E.
Posted

I can only speak for me, but have you tried eliminating tapioca starch?  It's in just about every bread-type item that's  gluten free. I could not figure out why I wasn't improving (even my local gluten-free restaurant was giving me symptoms), until finally, I just eliminated it for 1 week, and suddenly, problem solved.  So now, I limit my tapioca starch intake (and pay the price if I eat too much, but at least I'm prepared). 

Also, don't eat out for 1 week either; I know it sounds obvious, but you might be getting glutened.  

One thing is for sure...elimination diets take discipline. Take control, and listen to your body, and keep a food/symptom  log for that week as well.

Good luck!

Rob

 

DB in PVE Newbie
DB in PVE
Posted
On 5/22/2017 at 0:02 PM, celiwhat said:

 My ttg came back at 4. The doc suggested I try Metamucil and next week give lactaid a try as I still eat dairy. ....any advice or suggestions from anyone who has been through this are appreciated. ....I get that celiac may not be the only problem but I don't know where to go anymore as I've been searching for 2 years.

 

I understand your pain, I've been there.  It wasn't until I did a deep dive into nutrition and what we know from peer-reviewed medical journals that I began to understand that yes, the issue is much bigger than just gluten.  I have learned a lot from Dr. Michael Greger who reviews all of the clinical nutrition medical journals and summarizes them by topic into short easy to understand videos and blog posts.  Here is one on the whole leaky gut syndrome-- which aligns with your symptoms.  Your situation can get better, I promise.  I switched to a whole-food, plant-based diet and the results were dramatic and fast though it took about 3 months for my digestive system to completely heal.  In addition there were inflammation issues that I didn't even realize were connected to this that all cleared up.  I was pain free for the first time in YEARS.  

Start with this video, and explore more on his site.  Open Original Shared Link  

Sending good energy to you.

 

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