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


AlexandarZ

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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.


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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?


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  • 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. :)

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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
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    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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