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Maybe It's Not Gluten Intolerance?

AndyGee

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AndyGee Newbie
AndyGee
Posted

This is going to be looooooong so please bear with me.

Im a 23 year old male and have been struggling with really bad digestion issues since i was 18 (i don't even remember what it's like to feel normal after a meal any more :(...) I'm VERY underweirght (skinny runs in the family, but not this skinny... although i've ALWAYS been skinny)

When i was a kid i seriously had an iron stomach. I could eat anything with no repercussions. But around late 17 i started to get really bad digestive symptoms. For the first couple of years it was just this incredible pressure-like feeling on my stomach. It felt like, if i had a full stomach, that someone was sitting on it. Very uncomfortable... But apart from that, to be honest my symptoms were nil. I should point out that as soon as my stomach was full, and i stopped eating, i'd have that feeling... and it usually lasted 4 or 5 hours, gradually easing after around the 4th hour.

I missed three months of my final year of school because i felt so bad. This time was spent getting every diagnostic test you could imagine. Barium meals, colonscopy, endoscopy, an impressive myriad of blood tests (i was a human pin-cushion) CT scans, ultrasounds, went on strong antacids, antiemetics (to stop the nausea, i wasn't vomiting - although nausea wasn't really the problem anyway) and several different tests on my liver, kidneys, gall bladder et cetera ad nauseum. All came back negative. In a medical sense i was fit as a fiddle. This gave way to depression. Not clinically, but i was depressed about it.

After all this, my best friend (who is celiac) suggested i go to a nutritionist or a dietician (can't remember) and she seemed convinced it was a food intolerance. she wasn't sure which, so she put me on an elimination diet. But this diet was elimination for like - everything! Couldn't have food colouring, lactose, fruit, gluten... you get the drift. It was iffy though, because from what my best friend told me (their whole family are celiacs) that even the smallest amount of gluten can mess you up, which would make the elimination diet useless. But apparently i was allowed to eat hot chips (which have a dextrose batter on them?) I don't know. I'm rambling.

She said 6 weeks of that diet will give me an answer. Six weeks passed, symptoms were not completely gone. I can't be specific on if they were better or not, because it was 5 years ago i don't really remember - but it most definitely wasn't as bad as it is today. The nutritionist/dietician (can't remember) told me that because my symptoms weren't gone in 6 weeks, it wasn't a food intolerance. Great. So i gave up. i figured if i was going to get sick no matter what i ate, i'd eat whatever i want.

Years pass and about two years ago i had a sudden urge to have another go at finding a definitive answer. My GP thought it'd be a good idea to put me on some cortisol steroids or soemthing to boost my metabolism... i don't remember feeling too bad while i was taking them. Then he referred me to an endocrinologist who couldn't really help me as all my hormones were normal, apparently. Gave up again.

In the last year or so (especially in the last 6 months) the symptoms have gotten worse, but i'd say they've been getting progressively worse since it started - just very slowly. Adding new symptoms to the list that have appeared over the past year or so: sometimes when i eat i get an incredible pain around my stomach and ribs - if i get it, it's always straight after a meal. Lying down doesn't really help, but it only ever lasts about half an hour, after i've passed enough gas, it disappears. Sometimes it only lasts 20 minutes even. But the pain is pretty bad.

Also to add to the list - diarrhoea and constipation - although i should make a point about this. Over the past 2 or 3 weeks i've eliminated all lactose from my diet - and i haven't had any diarrhoea or constipation YET - although, i'd only ever get it about once a month anyway - could never find a trigger for it. It would always fall into the - i'd have a big meal, 15 minutes later (even sometimes before i'd finished eating) the stomach cramps of diarrhoea would set in - it'd last about an hour, then go away completely. Afterwards, though, i'd be constipated. Not badly though, as a couple of glasses of strawberry juice the next day would sort me out. Back to normal ready for THAT cycle all over again.

The biggest thing i've noticed, though, is that my bowels seem to be involved with the reactions a lot more now. Prettty much after every meal within half an hour i have to make a bowel movement - and it's very uncomfortable before hand. There is a HUGE urgency to go, but it also gives me a quesy feeling in my stomach - not nausea just a very uncomfortable feeling - add the that the uncomfortable pressure on my stomach, the bloating and the feeling like all my stomach contents are going to come out of my mouth without actually vomiting or having any nausea - then you ahve some idea of how i feel every day, pretty much constantly. Not to mention the very frequently gurgling of my abdomen! :)

Seems like i don't have many other symptoms that a lot of people relate to gluten intoelrance. I don't really get joint pain mcuh - but definitely sometimes i feel like i could fall asleep after a meal. Not always but definitely sometimes. Nobody else in my family has it,though.... the only odd thing is that my mum can't drink full cream milk or she gets diarrhoea... which is probably some form of mild lactose intolerance because she can drink light milk - i don't know.

For anyone who read the whole thing - THANK YOU AND I'M SORRY that it was such a rant - but it's been a constant struggle for nearly 6 years now and i don't know what to do.

Anyone have any advice? COULD it actually be a food intolerance or am i battling the wrong thing? It just seems like too many coincidences... especially with mum's inability to drink full cream milk and that one of my uncles has digestive problems that's never been diagnosed... add to that the uncle with down syndrome (which i've heard is closely related?) and you've got a pretty big puzzle of coincidences there.

*edit* just realised, something happened tonight even. My best friend (the one whose whole family are celiacs/gluten intolerant) told me that the eczema on the outsides of my arms (where my triceps are) and on my elbows could be because of gluten intolerance? It just seems like everything is pointing in that direction....

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rosetapper23 Explorer
rosetapper23
Posted

I don't know if this information will help--although I have celiac, I'm also very sensitive to soy. The symptoms you mention are the ones that I have when I've inadvertently eaten soy. Here in the U.S., there is such an over-abundance of soy, the food and drug manufacturers have been putting it in everything...from canned tuna to mayonnaise to salad dressings to supplements. From your spellings, I'm assuming that you're not from the U.S., so I don't know if the products in your country are now contaminated with soy, too. Is it possible that you're taking a daily supplement that contains soy? Or do you eat a particular product every day (like salad dressing) that might be the culprit?

You seem to have been tested for just about everything! Have the doctors tested you for parasites yet? Oftentimes this is overlooked. Did you do any traveling prior to the symptoms beginning? If so, parasites should definitely be tested for.

Other than that, I'm completely stymied by your symptoms. Hopefully, others will have some ideas that might help you.

AndyGee Newbie
AndyGee
Posted
  • Author

I don't know if this information will help--although I have celiac, I'm also very sensitive to soy. The symptoms you mention are the ones that I have when I've inadvertently eaten soy. Here in the U.S., there is such an over-abundance of soy, the food and drug manufacturers have been putting it in everything...from canned tuna to mayonnaise to salad dressings to supplements. From your spellings, I'm assuming that you're not from the U.S., so I don't know if the products in your country are now contaminated with soy, too. Is it possible that you're taking a daily supplement that contains soy? Or do you eat a particular product every day (like salad dressing) that might be the culprit?

You seem to have been tested for just about everything! Have the doctors tested you for parasites yet? Oftentimes this is overlooked. Did you do any traveling prior to the symptoms beginning? If so, parasites should definitely be tested for.

Other than that, I'm completely stymied by your symptoms. Hopefully, others will have some ideas that might help you.

I'm from australia :)

I would have no idea if i were eating soy... as far as i know i'm not... I'm not taking any daily supplements at all so.... *shrug*

I've literally been tested for everything... but my doc said from the beginning he always wanted to make sure it was nothing extremely severe like cancer or something. Which i can safely say it isn't after being tested for just about everything.

I developed symptoms when i was 18... almost on the dot. But the only travelling i had done before that was 14 when i went to Africa. Otherwise, nada. I'm assuming i was tested for parasites maybe... i'd think the medical profession was a joke if two different GP's, a gastroenterologist, an endocrinologist, a nutritionist and a dietician all didn't check for parasites. Timeline doesn't fit, i don't think anyway.

Happyw5 Explorer
Happyw5
Posted

I can relate to getting frustrated...I think it sounds like a food allergy/sensativity. I would ask to have a cbc(complete blood count)done. I would get sleepy after eating and my eosiniphill count would be really high (which in my case-eventually-showed as a peanut allergy. I was reacting to everything (not just peanuts) I was also diagnosed at the time with ibs and gerd. She told me go completely off peanuts and have very easy foods for a month-like soup and crackers...I did feel better, but years later I have developed so many more allergies, so I don't think i was completely diagnosed-I now have allergies to wheat, eggs, milk, hazlenuts, grapes, spinach, and soy...Not to mention all my outside allergies! I am still trying to figure out what is going on with me, I have been gluten free for six weeks and still having digestive issues..\\

I would start with a diary of everything you eat and write down how you feel every hour (or as much as possible) write down everything, from bowel movements (and form) to your energy levels. Good Luck and don't give up...

MsCurious Enthusiast
MsCurious
Posted

Have you ever been tested for Celiac? You have enough symptoms that I would ask doctor about it for sure. I'm still trying to figure out whats wrong with me, and a lot of your symptoms sound like mine. The instant bloating, pain, etc after eating...etc. BUT having said that, I'm thinking you should also see an allergist, because food intolerance and allergic reaction are quite different. Often food intolerances show up hours or a day or two after ingesting something your system doesn't tolerate, but allergies will give an almost instant reaction... usually instant up to an hour or so after ingestion from what I understand. So it would be prudent on your part to investigate both of those options, based on how quickly you're affected. Good luck, and hope you get answers and feel much better soon!

AndyGee Newbie
AndyGee
Posted
  • Author

Have you ever been tested for Celiac? You have enough symptoms that I would ask doctor about it for sure. I'm still trying to figure out whats wrong with me, and a lot of your symptoms sound like mine. The instant bloating, pain, etc after eating...etc. BUT having said that, I'm thinking you should also see an allergist, because food intolerance and allergic reaction are quite different. Often food intolerances show up hours or a day or two after ingesting something your system doesn't tolerate, but allergies will give an almost instant reaction... usually instant up to an hour or so after ingestion from what I understand. So it would be prudent on your part to investigate both of those options, based on how quickly you're affected. Good luck, and hope you get answers and feel much better soon!

my doc said he did a 'celiac screen' which im not sure what it entailed but it came back negative. Which, from what i've heard, isn't that uncommon :)

cassP Contributor
cassP
Posted

my doc said he did a 'celiac screen' which im not sure what it entailed but it came back negative. Which, from what i've heard, isn't that uncommon :)

were you eating enough gluten before your celiac screen??? and how complete was the screen? you should request a copy of your test results- if they only tested for 1 antibody then it was not a complete test.

many celiacs actually dont even have 1 single stomach issue- so complete testing is really important-

also- you said you didnt know if you were eating soy- let me just tell u- it's practically in EVERYTHING- almost worse than gluten.. its ridic.. im trying to avoid it- but its pretty damn hard- start reading ingredients- you'll see- even in choco chips... mayo... every packaged food, every salad dressing BOO HISS :angry:

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AndyGee Newbie
AndyGee
Posted
  • Author

were you eating enough gluten before your celiac screen??? and how complete was the screen? you should request a copy of your test results- if they only tested for 1 antibody then it was not a complete test.

many celiacs actually dont even have 1 single stomach issue- so complete testing is really important-

also- you said you didnt know if you were eating soy- let me just tell u- it's practically in EVERYTHING- almost worse than gluten.. its ridic.. im trying to avoid it- but its pretty damn hard- start reading ingredients- you'll see- even in choco chips... mayo... every packaged food, every salad dressing BOO HISS :angry:

yes i hadn't changed my diet then. It was in the first round of blood tests i did, before i underwent any invasive tests.

i checked all the labels in my cupboard and went food shopping today - only got stuff that was gluten, soy and dairy free.

Am i going crazy or do my symptoms represent a food intolerance? I remember when it started it came out of nowhere and it's been getting progressively worse over the past few years :(

AerinA Rookie
AerinA
Posted

yes i hadn't changed my diet then. It was in the first round of blood tests i did, before i underwent any invasive tests.

i checked all the labels in my cupboard and went food shopping today - only got stuff that was gluten, soy and dairy free.

Am i going crazy or do my symptoms represent a food intolerance? I remember when it started it came out of nowhere and it's been getting progressively worse over the past few years :(

I had a whole laundry list of seemingly random symptoms, all being treated as separate conditions, all unsuccessfully, until I got a new doctor who suggested I try the gluten free diet. So far I haven't found any other food issues besides gluten, but having been gluten free for a bit now I can say for sure that gluten was a BIG part of the problem. I saw major improvement in conditions that doctors had been unable to do anything about for years -- migraines, almost-narcolepsy, and my skin hasn't broken out except when I accidentally gluten myself, along with many more -- and from what I've read on the forum, there are just so many possible symptoms. Stopping the gluten is probably a very good place to start, even better if you can cut out dairy and soy. I hope you feel better very soon.

AndyGee Newbie
AndyGee
Posted
  • Author

Small update.

So i started a gluten-free diet about 4 days ago. First day of it i was the same, gurgling stomach, bowel troubles, bloating etc. By the second day, all the bowel symptoms were gone.

Good thing, right? So i bought more gluten free food.

Last night was very sick. Sicker than almost i've ever been. All the same symptoms but worse. So, i went back to check the packaging.

Yep, gluten-free alright. I havent consumed any gluten. But according to the packaging i've been consuming a lot of milk products, soy, sesame seeds and nuts. I had a snack before i went to bed, these gluten free cracker things. I'm going to list the ingredients because the symptoms hit me about 2 hours after eating this.

Incredients: Corn starch, rice flour, vegetable margarine [vegetable oil, vegetable fat, water, emulsifier (mono & diglycerides of fatty acids), salt], modified corn starch, dextrose (from corn), eggs, flavours [contains anticaking agent (magnesium carbonate), acidity regulators (citric acid, sodium phosphates), sulphites and milk], yeast, salt, thickener (guar gum), raising agnts (ammonium hydrogen carbonate, sodium bicarbonate), emulsifier (mono & diglycerides of fatty acids), flavour. CONTAINS EGG, SU;PHITES AND MILK. MAY CONTRAIN TRACES OF SESAME AND SOY.

this apart from some gluten free cookies (which i don't have the packaging for any more) are the only two extra things ive added to my diet over the last few days.

Any theories?

ravenwoodglass Mentor
ravenwoodglass
Posted

Wow that is quite an ingredient list. You could be reacting to the soy, the sulfites, the dairy or any number of those ingredients. Can you go with whole foods for a bit instead of stuff so heavily processed? That is going to help you heal faster and once you have been feeling better for a few weeks you can add in the heavily processed stuff one item at a time to see if it is a problem.

mushroom Proficient
mushroom
Posted

Hi Andy. I didn't read all the posts word for word, but generally at first, if your small intestine has been damaged by gluten you will have trouble digesting anything with milk sugars (lactose). This includes milk, cream, ice cream, sour cream, and maybe even cheeses and yogurt, so it is best to avoid all dairy for a while and then test yourself with cheese and yogurt since these are predigested by enzymes. Most of us have had to give up anything containing lactose for at least six months. If someone else has mentioned this, fine.

  • 2 years later...
michael42 Newbie
michael42
Posted

Small update.

So i started a gluten-free diet about 4 days ago. First day of it i was the same, gurgling stomach, bowel troubles, bloating etc. By the second day, all the bowel symptoms were gone.

Good thing, right? So i bought more gluten free food.

Last night was very sick. Sicker than almost i've ever been. All the same symptoms but worse. So, i went back to check the packaging.

Yep, gluten-free alright. I havent consumed any gluten. But according to the packaging i've been consuming a lot of milk products, soy, sesame seeds and nuts. I had a snack before i went to bed, these gluten free cracker things. I'm going to list the ingredients because the symptoms hit me about 2 hours after eating this.

Incredients: Corn starch, rice flour, vegetable margarine [vegetable oil, vegetable fat, water, emulsifier (mono & diglycerides of fatty acids), salt], modified corn starch, dextrose (from corn), eggs, flavours [contains anticaking agent (magnesium carbonate), acidity regulators (citric acid, sodium phosphates), sulphites and milk], yeast, salt, thickener (guar gum), raising agnts (ammonium hydrogen carbonate, sodium bicarbonate), emulsifier (mono & diglycerides of fatty acids), flavour. CONTAINS EGG, SU;PHITES AND MILK. MAY CONTRAIN TRACES OF SESAME AND SOY.

this apart from some gluten free cookies (which i don't have the packaging for any more) are the only two extra things ive added to my diet over the last few days.

Any theories?

Could be sulphites, although I've read in multiple places that getting over Gluten can takes up to two years! It's funny too because I stopped eating gluten about two weeks ago and about a week in, I got REALLY sick. Like sicker than I had been in years. I wonder if it has to do with my immune system finally getting back to some form of normal. Ever since my symptoms started, which I must say are only partially overlapping with yours (mainly loose stools and nausea) I never really got sick, and when I would get sick it would come on so slowly and then drag out even longer, almost as if I wasn't really sick, but still fighting something, chronically.

The rest of the time, I wouldn't feel sick, but I wouldn't feel healthy either. I always had headaches, nausea and no digestive distress, but never really 'normal' stools.

Since cutting out gluten(and dairy) I must say the headaches are almost completely gone and my stools are more normal than I ever remember.

I don't think I have Celiac, but I am definitely sensitive to something that is in my everyday diet.

For you and me, let's minimize sulphites, gluten, dairy and soy. Fact is the foods that contain these are generally highly processed and no where near as healthy as they are advertised to be. Not to mention that manufacturing methods (something you come to realize doesn't belong in the same sentence as 'food' anyyway) have gotten much worse.... more preservatives, more chemicals, more "nutritionally enhanced" products everywhere.

Last thing, if you want to see if Gluten affects you, you CAN NOT eat Gluten Free products either, Gluten Free just means less than 20ppm and most of those products will actually contain some gluten, which I believe is enough to cause us not to heal.

If you really want to find the source, don't eat anything that even has a label, it's not natural and not fit for human consumption. We've been brainwashed (even doctors) to think that we can eat anything we want whenever we want... heck maybe we would be immortal if it weren't for all the garbage we (love) force our bodies to process...

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      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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