Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I've Been Gluten Free For So Long, Yet I Still Get The Worst Stomach Aches


AlexandarZ

Recommended Posts

AlexandarZ Rookie

Hello, i just signed up to this site, just found out about it, seems pretty helpful. I've got a little issue.. i was diagnosed with celiac last year around June and i used to get the worst stomach aches ever, no one could possibly imagine, i went on to a gluten free diet and started feeling better bit by bit. The doctor said i should feel completely better by around September and have no issues with stomach aches etc. Its been a year since this so called September actually a year and Two months. I cant find the problem i never eat out because i'm really paranoid about eating gluten but to this very day i found going to the toilet to be a very irregular gamble its really difficult to go out and enjoy myself because i do get these random stomach aches, that hurt so much. My stomach aches seem to get better then worse then slightly better then worse again,

Just wanted to know what you guys thought the problem is and why? Opinions, thanks.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

It can take some people years (yes years) to get better.

I'm thinking you might have another food intolerence with this.

Keep a food diery. Write down everything you eat, and if you see a pattern with the stomach aches then cut the food out for a while.

Others on this site rave about probiotics, have you tried them?

AlexandarZ Rookie

It can take some people years (yes years) to get better.

I'm thinking you might have another food intolerence with this.

Keep a food diery. Write down everything you eat, and if you see a pattern with the stomach aches then cut the food out for a while.

Others on this site rave about probiotics, have you tried them?

What are probiotics? i just looked them up on wikipedia and it seems pretty complicated, mind to dumb it down?

tom Contributor

It makes me think 'additional intolerance' too. For me, soy was doing that & I first had the notion through keeping a food/symptom diary.

The thing that *really* surprised me was that it turned out that the previous 3 or5 day soy-free trials just weren't long enough. It took ~2 wks soy-free before I really knew how great I could feel.

So many products w/ long ingred lists have some soy, ugh.

Enough about soy - if you have other intolerances, it could be anything. I'd say definitely start a food/symptom diary & remember that the reactions may not even be same day.

Good luck!

bartfull Rising Star

Soy, dairy, and corn seem to give a lot of us problems. I would try ditching all three for a while and see if it helps. Then add back one at a time. Be aware, corn is in almost every single product that has more than one ingredient, and even in some things that have only ONE "ingredient". If something is PROCESSED with corn, they don't have to list it as an ingredient. For example, bagged salads at the grocery store are washed in a citric acid wash, and these days, almost all citric acid is derived from corn. Baby carrots are dusted with corn starch to keep them dry in the bag. A lot of fruits and veggies have a waxy coating to make them look more appealing in the grocery store, and that coating usually has corn in it.

Probiotics are the good gut bacteria that we all need. You can find them in capsules at the health food store. Get the kind that are refrigerated because they are more likely to have LIVE bacteria. Yougurt has probiotics, but most grocery store yogurt also has corn and lots of other things you probably shouldn't have right now. If you can find it at the health food store, Stonyfield Farms yogurt is WONDERFUL! It is 100% organic, contains six different strains of probiotics, and it's sweetened with organic sugar instead of corn syrup.

You can also eat sauerkraut if you like it. That has lots of probiotics too. :)

dilettantesteph Collaborator

A food diary is what worked for me. Don't just write down the foods, write down what company they come from if they are processed or the source if they aren't. I found that I could tolerate certain items from one company and not another. Sometimes I could tolerate a food from one vendor at a farmer's market, but not another.

You also need to figure out the delay between eating the food and the reaction. It can take a few days. I try not to make more than one change per week.

  • 3 weeks later...
javic Apprentice

How are the stomach aches going now?

Have you had your antibody levels tested again since diagnosis? Have they gone down?

I was reading something about refractory celiac disease - I believe this means that the symptoms will not go away even on a gfd. Very rare mind you. More likely to be additional intolerance. Have you worked it out yet?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 2 years later...
SMDBill Apprentice

I am currently going through rough stomach pain that is improving since being back to gluten-free. It was excruciating and would wake me as my intestines cramped. It got so bad at one point I thought I had a bladder infection because it was even sensitive to the touch right where your bladder is, but it was intestinal instead. To me it sounds like you may have another symptom showing signs similar to what gluten did. I am gluten sensitive and lactose intolerant. If I have heavy dairy, I get similar pain, but the added beauty of hemorrhoids and diarrhea. Have you been tested for milk, soy, corn, or other sensitivity or allergy? Have you had a colonoscopy to determine if maybe you have an intestinal blockage or kink in the intestine? Lots of things can cause that pain so it's important to know the cause, or at least eliminate some things as a cause. Your GI may be a good one for these pains unless you are maybe getting glutened without knowing it or if your symptoms are just slower to resolve after being gluten-free.

 

Best of luck to you! Hope it works itself out soon.

  • 5 weeks later...
Seifer Rookie
I recovered from severe IBS and stomach pains (after burnout and tooth infections) that had me bedridden and pretty much suicidal. I had to change my diet back and forth a million times before I realized what works. 
 
You have to ditch wheat ofc in all forms. then you have to avoid msg/yeast extract which also triggers stomach problems and overeating. no probiotics either, no yougurt which contains lactic acid and live bacteria that irritate the stomach. you also avoid lunch meats of all kinds (ham, sausages, bacon etc) with sodium nitrite which is terrible for the stomach. then you have to drink WATER and nothing else. no soda pop, no coffee, no beer, no wine, no juice, no tea, just plain water, sparkling or regular. You also avoid cheese which contains live bacteria and is a stomach irritant. what you eat is FRESH MEAT/FISH/CHICKEN (from frozen is fine) eggs and fresh milk. FRUITS, BERRIES and VEGETABLES (except cruciferous vegetables and leaves which contain antinutrients and are also stomach irritants). You eat carbs (POTATOES and other TUBERS, WHITE RICE is also fine but not brown rice (stomach irritant) and FAT (butter/cream, olive oil, coconut, mostly saturated is best) with every meal. milk chocolate, ice cream or some sweets are also fine after the meal in moderation. You keep the amount of nuts/seeds/peas/lentils to a minimum, these all contain antinutrients that irritate the stomach. You don't reheat leftovers in the microwave or elsewhere. It degrades the protein structure, dries out the food, and makes it harder to digest, inflammatory and decreases nutritional value. eat leftovers straight from the fridge in room temperature. 
 
You have to eat the sufficient amount of macronutrients (protein, fat and carbs) and micronutrients (minerals and vitamins) at all meals throughout the day. This will keep stomach acid at the appropriate levels and will also keep your metabolism at a high level which is very important to resolve stomach problems and health problems in general (your immune system only works properly when your metabolism is strong). 
Lisa Mentor

The origin of this post is over three years old.

 

After being gluten free  for more than ten years, I decided it was time to try all the wonderful named brand cereals after such a long hiatus .  Yes, the lactose intolerance reared it's ugly head once again. I may try the non-lactose milks, but I'm not too big of a cereal fan either.  Back to the Eggo's.

 

Sometimes, the issue may be a simple one. :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    3. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    5. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,361
    • Most Online (within 30 mins)
      7,748

    BarryZ
    Newest Member
    BarryZ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.