Going gluten free causes severe stomach pain for years

[Estrata]

Hi all!

I know this has been posted before but I can't say this is withdrawl because it lasted YEARS.

The first time I went gluten free was 10 years ago after doing a "juice fast" and all my aches and pains, symptoms from the arthritis in my foot (I was 30), seasonal allergies, etc... just vanished and I was able to link it all to gluten. So far so good.

However when I became pregnant, 2 years later, I developed stomach issues related, it seemed, to dairy - so I cut that out too. It helped somewhat, but the digestive issues continued (mainly pain and severe bloating). I tried so many things, low FODMAP, suppliments - even if I just drank water all day I would still end up bloated and in pain. Nothing really helped - though dairy did seem to make it worse. It was like my stomach didn't want anything in it, I was always in pain, reflux issues, finding it hard to burp like things were just paralyzed in there.

About 5 years later (so that's 7 years on a careful gluten free, dairy free diet) we were on a month long RV trip. I was sick of being so careful woth what I ate, and it was so much harder on the trip, so I just started eating anything. Low and behold, my stomach issues disappeared! I was still bloated (though not as bad) but no pain. Of course I also had far less energy and the aches and pains were back, but no constant stomach pain!

Another year goes by, I'm sick of my back always hurting, so I cut out gluten again. Within 24 hours my stomach starts hurting again. I stick with it for a few months, until I start getting esophageal spasms at night (not fun). I start eating gluten again, and the next morning my stomach issues are gone.

I have tried a couple more times, cutting out almost everything (once going on a fruit and veg only diet, another just bone broth), going heavy on digestive enzymes, HCL... (I tend to avoid probiotics as they make the bloating so much worse). The stomach pain and bloating always come back when I cut out gluten, and go away when I start again. It's so defeating. I basically have to choose between inflammation pain (and likely an eventual autoimmune disease) or gut pain. 

I feel like I've tried it all, but on the slim chance anyone has experienced something like this, I thought I would try posting. Thank you for reading! 

[trents]

Welcome to the forum, Estrata!

Have you been officially diagnosed with celiac disease?

 

[Estrata]

58 minutes ago, trents said:

Welcome to the forum, Estrata!

Have you been officially diagnosed with celiac disease?

 

No, I never was. Initially because I didn't want to deal with having to eat gluten for weeks first, but now I just need to get around to getting tested.

[trents]

You only have to be on gluten for two weeks if you can find a doc willing to do an endoscopy/biopsy without first doing the blood antibody test. It sounds like you have periods off and on where you are back on gluten anyway. The blood antibody test would require going back on regular amounts of gluten (defined by the Mayo Clinic as two slices of wheat bread daily or the gluten equivalent) for 6-8 weeks. It sounds like you are due for an endoscopy anyway because the symptoms you list make me think of things like peptic ulcers. Have you been checked for an H. Pylori infection or SIBO (Small Intestine Bacterial Overgrowth)? Have you considered MCAS (Mast Cell Activation Syndrome) and histamine intolerance (these last two are closely related)?

Edited January 14, 2023 by trents

[Wheatwacked]

If you are eating processed gluten free food, they add stuff that you may be reacting to. My go to for upset stomach is Alka Selzer. Fun fact alka seltzer original is sodium bicarbonate, citric acid and acetlysalicilic acid (aspirin). vitamin B11 is Salicylic Acid. It came from Willow Bark tea, used by Native Americans. Vitamin B11 (Salicylic acid) : The vitamin along with vitamin B12,that is involved in the formation of RNA and DNA.

Aside from that I switched to Dr Haases diet:Albumin milk, Pot cheese, Banana. Orange. Vegetables. Gelatin. Meat THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE and now eat mostly from the Trace Gluten Elimination Diet   and went from Alka Seltzer most nights to just a few times a month.

Gluten foods are fortified with vitamins, gluten free foods are not required to, so look for the difference. My first guess would be not enough folate and if you are deficient in folate your body will use up choline to compensate in detoxifying (methylization) homocysteine and choline is needed for fat digestion mitochodria membrane, nerve transmission and more. One clue would be a change in bowel movements, gall bladder type problems. Choline is best found in beef, liver, eggs and milk which they tell us not to eat. 4 eggs or 10 cups of broccolli a day is the RDA 425 mg,but the upper limit is 3500 mg. NHANES studies show the most benifits are to those in the top 10%. .  CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

Edited January 15, 2023 by Wheatwacked
typo

[Estrata]

16 minutes ago, Wheatwacked said:

If you are eating processed gluten free food, they add stuff that you may be reacting to. My go to for upset stomach is Alka Selzer. Fun fact alka seltzer original is sodium bicarbonate, citric acid and acetlysalicilic acid (aspirin). vitamin B11 is Salicylic Acid. It came from Willow Bark tea, used by Native Americans. Vitamin B11 (Salicylic acid) : The vitamin along with vitamin B12,that is involved in the formation of RNA and DNA.

Aside from that I switched to Dr Haases diet:Albumin milk, Pot cheese, Banana. Orange. Vegetables. Gelatin. Meat THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE and now eat mostly from the Trace Gluten Elimination Diet   and went from Alka Seltzer most nights to just a few times a month.

Gluten foods are fortified with vitamins, gluten free foods are not required to, so look for the difference. My first guess would be not enough folate and if you are deficient in folate your body will use up choline to compensate in detoxifying (methylization) homocysteine and choline is needed for fat digestion mitochodria membrane, nerve transmission and more. One clue would be a change in bowel movements, gall bladder type problems. Choline is best found in beef, liver, eggs and milk which they tell us not to eat. 4 eggs or 10 cups of broccolli a day is the RDA 425 mg,but the upper limit is 3500 mg. NHANES studies show the most benifits are to those in the top 10%. .  CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

That's interesting about the Choline, as I keep coming back to gall bladder issues when I'm researching these symptoms. I'll definitely look into that. 

I wish I could say it was processed gluten free foods, but I tend to avoid those as well and the symptoms seem to crop up again no matter what diet I follow (just eliminating gluten automatically makes my digestion go haywire). I feel like my bacteria are screaming for gluten but honestly they just don't stop, not even after years! I will say when I was gluten free was the only time in my entire life I didn't suffer from severe constipation - I kind of think my entire system developed around having severely sluggish digestion and simply can't function at a normal pace when gluten is eliminated. 

[Estrata]

3 hours ago, trents said:

You only have to be on gluten for two weeks if you can find a doc willing to do an endoscopy/biopsy without first doing the blood antibody test. It sounds like you have periods off and on where you are back on gluten anyway. The blood antibody test would require going back on regular amounts of gluten (defined by the Mayo Clinic as two slices of wheat bread daily or the gluten equivalent) for 6-8 weeks. It sounds like you are due for an endoscopy anyway because the symptoms you list make me think of things like peptic ulcers. Have you been checked for an H. Pylori infection or SIBO (Small Intestine Bacterial Overgrowth)? Have you considered MCAS (Mast Cell Activation Syndrome) and histamine intolerance (these last two are closely related)?

I would totally agree with all of those potential issues, and in fact I was scheduled to get both an endoscopy and colonoscopy before COVID hit. But since then I discovered that going back to a gluten diet pretty much cures my GI issues, and so that kind of got me thinking it must be something else. I have tried to find other people who have had similar issues lasting for years, but it just doesn't seem to happen. Everyone seems to recover from any "withdrawal" symptoms after, at the most, 6 months. I was wondering if something about eating gluten could cover up other issues, like SIBO, but it seems that the opposite is only true (like, gluten can aggravate SIBO). I dunno, I'm such a genetic cesspit I think this is just another thing to try to shrug off and go on as best I can. *end self pity*

[Wheatwacked]

The fastist way to tell if it is choline is to use choline supplements. The upper limit is 3500 mg. I take 840 mg of phospotidly choline, it's more like the food sourced, but is only about 500 mg of choline. You'll know in a few days if it helps. Even if it doesn't, the extra goes to free up folate so it can do its other jobs. 

 

[Grammy9]

When I was diagnosed celiac I was told BY MY DENTIST not to be surprised if I am also lactose intolerant. And so it is. Lactose causes great stomach pain for me. Plus citrus causes gut pain. So I avoid not only gluten but all dairy because as time went by I realized my lactose free milk was also giving me pain. 😕 So I use Oatly milk when I need dairy. You can also use almond milk. Anyway it’s worth the try. 

[Wheatwacked]

Our lactose tolerance as adults depends on the lactobacillus that live in our guts. Somehow they get killed off and we no longer have the lactase they produced. I restored mine by making my own salt fermented dill pickles for a few months. The other thing is that commercial dairies use feed additives to increase production and that increases the omega 6 to a 5 to 1 ratio with omega 3. In contrast pasture fed has a less inflammatory 1:1 ratio and Organic milk (at least 120 day pasture fed) is 3:1.  Plus it tastes better.

[Grammy9]

2 hours ago, Wheatwacked said:

Our lactose tolerance as adults depends on the lactobacillus that live in our guts. Somehow they get killed off and we no longer have the lactase they produced. I restored mine by making my own salt fermented dill pickles for a few months. The other thing is that commercial dairies use feed additives to increase production and that increases the omega 6 to a 5 to 1 ratio with omega 3. In contrast pasture fed has a less inflammatory 1:1 ratio and Organic milk (at least 120 day pasture fed) is 3:1.  Plus it tastes better.

So that’s why the lactase supplement helps with consuming lactose with no pain. Now I get it. Thanks.