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Please Help Me Kill My Acid Reflux


Strawberry-Jam

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Strawberry-Jam Enthusiast

hello. I am gluten free over 9 months now. My acid reflux went almost completely away and then it came back. it is now at levels just as bad as pre-gluten free and sometimes worse. I do not know how to treat it. I only have insurance that is catastrophic (emergency room and hospitalisation only) so I cannot afford doctor's visits or any medical testing.

I do not eat, and haven't eaten for weeks/months:

- anything citrus

- anything tomato

- anything peppermint (I even use fennel toothpaste)

- anything chocolate

- anything spicy (the only spice I use is sea salt)

- anything with caffeine

- anything with alcohol

and of course I haven't eaten gluten since diagnosis, soy since I discovered my symptoms after it, or dairy since about a month ago I ate a litre of ice cream and felt kinda drunk.

I am also, right now, testing for fructose malabsorption, so I am sugar free, and testing for nightshades intolerance, so none of those either. I have stopped all supplements in case "gluten free" isn't really gluten free. I do not eat processed foods except for rice cakes now and again or buckwheat crackers. (I've been grain free off and on in the past few months and never noticed a difference.)

Recently I've been eating boiled meat or eggs for breakfast (sometimes bacon, but I pat-dry all the oil off it), 100 grams of cashews for lunch, and then a nut or seed butter with rice cakes for dinner. I'm afraid of fruits and veggies because of salicylates and fructose and all those scary-sounding words.

I know reflux sufferers shouldn't eat much fatty foods, but I can only eat a certain amount of food in a day, and if I don't eat something calorie-dense like nuts, seeds, meats, and eggs, then I will starve. I can only fit so much rice, potatoes, and veg in my stomach. In one day I can only have about 3 small bowls of food (and a few cups of tea or other beverage) without hurting myself. Pre-coeliac I lived on ensure and lost 15 lbs in two weeks. of course now ensure and all like products are out because of soy and milk in them.

My reflux continues to worsen. I have tried apple cider vinegar, no dice. I tried baking soda dissolved in water but it made me gassy and nauseated. I am currently on a two-week course of OTC pantoprazole (ppi--under name of "pantup relief"), but after about four days of it I feel no relief whatsoever. I have tried throat teas with things like licorice, ginger, marshmallow root, etc., and they don't help, or barely help. I've tried candied ginger and ginger soda with real ginger in it, but no dice. I can't really stomach ginger tea. I have had a lot of fennel tea tho for gas but my current diet seems to be slowly decreasing the gas--we'll see.

I've tried digestive enzymes and they seem to help, but the ones I currently have use potato maltodextrin so I stopped them for a while. also, all the digestive enzymes available here have peppermint oil in them, but I tho't those with reflux shouldn't have peppermint?

right now I bought powdered slippery elm and made a tea out of it and drank it. hopefully that will work for the symptoms. but what about the cause?

I was diagnosed with a small hiatal hernia, but I've never responded to ppis or acid medicines. I was on nexium for a long time and something even more powerful for a while as well, and I also tried some other kind of ppi, but none of them worked. I was given carafate once and that worked better, allowing me to eat solid foods again, but I was not symptom- or pain-free by any means.

I can't take pepto or similar because I will burp it up again, and the taste will make me want to vomit all day.

i am so scared that I need surgery or some invasive testing but I can't get full insurance again until next August. And I don't want to leave Ireland before my year is over! I am supposed to be enjoying myself. I thought that coming over to ireland, a very coeliac-friendly country, and living in a flat by myself where I control my kitchen, then going on an elimination diet, would help. I've tried several elimination diets and just get sicker and sicker. There is no diet that can test for anything and whenever I'm on one I have all these doubts about what I am eating and what causes what. my symptoms and food diary tells me nothing.

I used to struggle with self-harm and I have to admit that I just banged my head against the wall so hard that I saw spots. I am struggling very hard against the temptation to start cutting again (I haven't cut for over two years). I like to cut because it is a pain that I can control. but I know that I will be covered in scars in no time and I will still have reflux, so there's no point in it. also, I always want to puke when my reflux gets so bad, and the only thing saving me from bulimia is my lack of a gag reflex (I can stick my finger as far down my throat as possible and will not gag on it).

:( doesn't even begin to explain it


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pricklypear1971 Community Regular

I know this goes against all common sense, but eat something high protein, high fat, and greasy - like fried chicken (gluten-free and whatever else free you need to do).

I also had horrible reflux, and ulcers... And to this day I LOVE something fatty to settle my stomach down.

Of course, most of my issues were probably gluten related (couldn't do spicy or acidic either), and drinking quarts of water helped tremendously, and I had to learn visualization to get rid of the stomach pain and stop my stomach from pumping out a gallon of acid.....

I don't know why fried chicken works, but it does.... French fries work, too, but that's a nightshade.

At this point your stomach and esophagus are probably raw and burnt. Water, crackers (gluten-free), and more of the same. Fennel tea would make me hurl, btw. Peppermint tea (peppermint/lemon) actually calms my stomach.

I know I'm not a lot of help since I'm telling you to do the opposite of everything you've heard is "good", but it works for me.

Strawberry-Jam Enthusiast

next time I make bacon, maybe I won't pat it dry? but I was eating things fried in olive oil a lot and it didn't make things magically better or anything. a few weeks ago I was eating exclusively things stir-fried in olive oil, then moved to sunflower oil, then moved to boiling things in saltwater since the reflux wasn't improving.

and I did have peppermint tea for gas etc. back when I first went gluten free, but stopped it because of reflux. I've gotten to where I don't really like really minty tastes anymore.

I really like fennel taste, so.

I don't know. I have reflux after almost every meal. I have reflux on an empty stomach. I can get bloating and reflux from drinking water. I don't know if minor changes will help things.

Skylark Collaborator

First, keep coming here for support before you hurt yourself. I'm really sorry to hear you're suffering so badly.

Lack of nutrition is probably affecting your mind. Some B-complex, vitamin C, and fish oil or 2-3 servings of fish a week might help you cope better. You may not be getting enough vitamin C on a meat/nuts/eggs and that will make you depressed. It's why I keep telling you to eat some fresh foods. Get an enteric coated fish oil capsule if you prefer fish oil to fish so you don't burp it up. It sounds like you need to go back on the enzymes - they won't interfere with your low-fructose test and if they helped you can probably tolerate a little highly processed potato maltodextrin.

Elevate the head of your bed so you're sleeping on a bit of a slant. It will help with the nighttime reflux. Also don't eat before bedtime.

Hold on to the low-fructose for a few more days - you haven't been off fructose long enough to tell yet. Please keep coming here rather than hurting yourself!

AVR1962 Collaborator

You mentioned you are not eating spicy foods but what are the herbs you are using, if any? Oregano gives me terrible issues. Are you taking in an bell peppers? That's another one that can cause issues. Sounds like you really need something to coat your stomach. If Pepto makes you sick I think I would look for something else. What about Tums or Rolaids? Something I have eaten to settle my stomach is a little bit of plain potato chips, almost does the same that crackers would do before.

pricklypear1971 Community Regular

Eat what makes you feel good.

The BIGGEST factor for me was NOT having an empty stomach - kept the acid at bay... Best method for me was water and crackers. Eat/drink to keep something in the stomach... Eat before you're hungry.

Keeping something in your stomach isn't a minor change - its a flat out challenge.

Have you considered that by constantly changing your diet (although I understand why) may contribute to the reflux? If you are still switching foods up you will inevitably hit something that doesn't agree with it. If you find a food that calms it at all, keep eating it.

Strawberry-Jam Enthusiast

skylark, thanks for everything. you keep showing up in my threads. it means a lot to me.

I have a liquid b12/b complex with sorbitol in it. maybe I will take it every other day. and I forgot about vitamin C... don't want scurvy... I do have a multi I used to take when I wasn't having such bad problems. it has corn in it, but not much other offending ingredients, iirc. maybe I will try that again? I am just so leery of supplements. I have never actually pinpointed corn as a problem for me, even tho I switched to a corn-free multi in the midst of all this troubles.

fish is good. I have canned mackerel now that I will eat tomorrow. I ate some salmon a few days ago. I like kippers and sardines. I think I know where I can get some fresh trout for not too expensive. I will make a point to get fish every three days or so.

also I just used some green bean tins to prop up by bed about 4 inches or so.

@ AVR -- I use no spices at all except sea salt, which I put in the water whenever I boil anything. As for antacids, I tried Rennie (the Irish tums, basically) and it didn't help that much. I also tried a stomach acid barrier called fruitin which helps only intermittently. Slippery elm is a good natural coating agent which I just tried and I kinda like it, even if the dregs are a bit hard to swallow (slimy).

@ prickly pear -- because the reflux has been pretty much 24/7 for ages, I don't know what calms it and what excites it. sometimes I would have no reflux after a bowl of rice & salt. Sometimes I would have a LOT. the reflux might also be on some kind of time lapse so that makes it really hard, if not impossible, to track down what causes it.

basically, food causes it. I don't even know. I do have two jobs and have a lot of running around so I only have 3 discrete chances in which to eat (breakfast, lunch, dinner). I go hungry pretty often. reflux does calm down in the early stages of hunger and when I'm reaching about the 24 hour mark.

I will buy some buckwheat flour, maybe, and make my own crackers out of it. (I bought some buckwheat crackers to try first, but it would be expensive to keep buying the little packet alla time.) I will try to carry crackers in my purse always. atm I carry 100g packs of cashews around.


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pricklypear1971 Community Regular

skylark, thanks for everything. you keep showing up in my threads. it means a lot to me.

I have a liquid b12/b complex with sorbitol in it. maybe I will take it every other day. and I forgot about vitamin C... don't want scurvy... I do have a multi I used to take when I wasn't having such bad problems. it has corn in it, but not much other offending ingredients, iirc. maybe I will try that again? I am just so leery of supplements. I have never actually pinpointed corn as a problem for me, even tho I switched to a corn-free multi in the midst of all this troubles.

fish is good. I have canned mackerel now that I will eat tomorrow. I ate some salmon a few days ago. I like kippers and sardines. I think I know where I can get some fresh trout for not too expensive. I will make a point to get fish every three days or so.

also I just used some green bean tins to prop up by bed about 4 inches or so.

@ AVR -- I use no spices at all except sea salt, which I put in the water whenever I boil anything. As for antacids, I tried Rennie (the Irish tums, basically) and it didn't help that much. I also tried a stomach acid barrier called fruitin which helps only intermittently. Slippery elm is a good natural coating agent which I just tried and I kinda like it, even if the dregs are a bit hard to swallow (slimy).

@ prickly pear -- because the reflux has been pretty much 24/7 for ages, I don't know what calms it and what excites it. sometimes I would have no reflux after a bowl of rice & salt. Sometimes I would have a LOT. the reflux might also be on some kind of time lapse so that makes it really hard, if not impossible, to track down what causes it.

basically, food causes it. I don't even know. I do have two jobs and have a lot of running around so I only have 3 discrete chances in which to eat (breakfast, lunch, dinner). I go hungry pretty often. reflux does calm down in the early stages of hunger and when I'm reaching about the 24 hour mark.

I will buy some buckwheat flour, maybe, and make my own crackers out of it. (I bought some buckwheat crackers to try first, but it would be expensive to keep buying the little packet alla time.) I will try to carry crackers in my purse always. atm I carry 100g packs of cashews around.

I know the exact sensation you are talking about - stomach feeling calm when hungry. Drink water. Don't bloat on it, just keep it in your stomach. Set an alarm - 8 oz or less (or more) when it starts to empty.

I HATE eating to get rid of the burn, or to raise sugar levels (that may be another thing that triggers it - crashing sugar). I don't know how you're getting sugars in your diet but carry some of that, too.

You will eventually figure something out. A big challenge may be sticking with a specific diet long enough to recognize it. I understand, when you're miserable and in pain you just want it to stop - even if it means eating mice nuts ;).

Strawberry-Jam Enthusiast

my stomach feels like a black hole when it is empty.

cahill Collaborator

Eggs do this to me,,

pricklypear1971 Community Regular

my stomach feels like a black hole when it is empty.

Well, is that good or bad?? I'd take a black hole over a volcano, I think (as long as I am not inserted into the hole because then I'd get spaghettified and that is ugly :( ).

Strawberry-Jam Enthusiast

I considered eggs being a factor, but I haven't had eggs in two days I think, and that didn't fix it. also, I read somewhere that boiling eggs is ok, so I am going to boil eggs from now on.

whatever causes my reflux doesn't do it like normal reflux where it's immediate or like 2 hours later. it's just meals in general seem to cause it.

also, fyi, I exercise regularly, don't wear tight-fitting waistlines, and am not overweight. In fact, I am very afraid of becoming underweight if this continues. sometimes i feel like giving up on food altogether.

Macbre Explorer

hello. I am gluten free over 9 months now. My acid reflux went almost completely away and then it came back. it is now at levels just as bad as pre-gluten free and sometimes worse. I do not know how to treat it. I only have insurance that is catastrophic (emergency room and hospitalisation only) so I cannot afford doctor's visits or any medical testing.

I do not eat, and haven't eaten for weeks/months:

- anything citrus

- anything tomato

- anything peppermint (I even use fennel toothpaste)

- anything chocolate

- anything spicy (the only spice I use is sea salt)

- anything with caffeine

- anything with alcohol

and of course I haven't eaten gluten since diagnosis, soy since I discovered my symptoms after it, or dairy since about a month ago I ate a litre of ice cream and felt kinda drunk.

I am also, right now, testing for fructose malabsorption, so I am sugar free, and testing for nightshades intolerance, so none of those either. I have stopped all supplements in case "gluten free" isn't really gluten free. I do not eat processed foods except for rice cakes now and again or buckwheat crackers. (I've been grain free off and on in the past few months and never noticed a difference.)

Recently I've been eating boiled meat or eggs for breakfast (sometimes bacon, but I pat-dry all the oil off it), 100 grams of cashews for lunch, and then a nut or seed butter with rice cakes for dinner. I'm afraid of fruits and veggies because of salicylates and fructose and all those scary-sounding words.

I know reflux sufferers shouldn't eat much fatty foods, but I can only eat a certain amount of food in a day, and if I don't eat something calorie-dense like nuts, seeds, meats, and eggs, then I will starve. I can only fit so much rice, potatoes, and veg in my stomach. In one day I can only have about 3 small bowls of food (and a few cups of tea or other beverage) without hurting myself. Pre-coeliac I lived on ensure and lost 15 lbs in two weeks. of course now ensure and all like products are out because of soy and milk in them.

My reflux continues to worsen. I have tried apple cider vinegar, no dice. I tried baking soda dissolved in water but it made me gassy and nauseated. I am currently on a two-week course of OTC pantoprazole (ppi--under name of "pantup relief"), but after about four days of it I feel no relief whatsoever. I have tried throat teas with things like licorice, ginger, marshmallow root, etc., and they don't help, or barely help. I've tried candied ginger and ginger soda with real ginger in it, but no dice. I can't really stomach ginger tea. I have had a lot of fennel tea tho for gas but my current diet seems to be slowly decreasing the gas--we'll see.

I've tried digestive enzymes and they seem to help, but the ones I currently have use potato maltodextrin so I stopped them for a while. also, all the digestive enzymes available here have peppermint oil in them, but I tho't those with reflux shouldn't have peppermint?

right now I bought powdered slippery elm and made a tea out of it and drank it. hopefully that will work for the symptoms. but what about the cause?

I was diagnosed with a small hiatal hernia, but I've never responded to ppis or acid medicines. I was on nexium for a long time and something even more powerful for a while as well, and I also tried some other kind of ppi, but none of them worked. I was given carafate once and that worked better, allowing me to eat solid foods again, but I was not symptom- or pain-free by any means.

I can't take pepto or similar because I will burp it up again, and the taste will make me want to vomit all day.

i am so scared that I need surgery or some invasive testing but I can't get full insurance again until next August. And I don't want to leave Ireland before my year is over! I am supposed to be enjoying myself. I thought that coming over to ireland, a very coeliac-friendly country, and living in a flat by myself where I control my kitchen, then going on an elimination diet, would help. I've tried several elimination diets and just get sicker and sicker. There is no diet that can test for anything and whenever I'm on one I have all these doubts about what I am eating and what causes what. my symptoms and food diary tells me nothing.

I used to struggle with self-harm and I have to admit that I just banged my head against the wall so hard that I saw spots. I am struggling very hard against the temptation to start cutting again (I haven't cut for over two years). I like to cut because it is a pain that I can control. but I know that I will be covered in scars in no time and I will still have reflux, so there's no point in it. also, I always want to puke when my reflux gets so bad, and the only thing saving me from bulimia is my lack of a gag reflex (I can stick my finger as far down my throat as possible and will not gag on it).

:( doesn't even begin to explain it

Nuts and seeds (trail mix) cause me more acid reflux then any other food. You might want to lay off those for a few days & see if that is the problem.

dilettantesteph Collaborator

My son and I both get acid reflux as a trace glutening symptom. It went away with cleaning up our diets.

ravenwoodglass Mentor

Have you ever done the type of elimination diet where you start with 5 foods? You would start with foods you do not commonly eat, according to my allergist that way you would be starting with foods you are less likely to react to. For me that meant a starting point of turkey, rice, peas, sweet potatos and I was allowed cranberry juice. No coffee, tea or any spices. You would eat your starting foods until symptoms are gone and then add in one food at a time in pure form 3 times a day for a week. If after that week is over you still are symptom free you would keep that food in and add another. If I reacted he had me drop that food and wait until the reaction was over before adding another. It is a boring way to eat but did help me get my celiac diagnosis and helped to pinpoint my additional problems with soy.

There is also a possiblity that you might have something going on other than a food intolerance. Can you see if there are any sliding fee scale clinics where you are?

Strawberry-Jam Enthusiast

I tried a 5 food elimination diet for about two weeks, or at least a week and a half, but I didn't improve. I was eating mince beef, white rice, green peas, and sweet potatoes I think. then I switched to red lentils, brussels sprouts, cashews, white potatoes, and eggs. that didn't work either.

I wash my hands constantly and dont know where trace gluten can be getting in, unless it is in my cashews? I wash my cuts of meat off with water and stopped getting mince meats (even tho it is cheaper) just in case the grinders are cc'd. I wash my eggs with soap and water before boiling. I wash all my groceries and my hands as soon as I get inside my flat.

I wonder if my recent depression is not attributable to a thing of peanut butter I ate. depression is my biggest soya symptom. peanuts are legumes as well. goodbye peanut butter.

one of these days I will do a 2-day cleanse where I just drink lots of water and eat nothing but rice or some food like that which no one says causes reflux. or maybe nothing but slippery elm. I will see if I can't find a brand of rice that actually tests for gluten or smth. but I'm going on a trip this weekend and I already paid so I need calories and energy. I'll be taking boiled eggs, sunflower seed butter, and buckwheat crackers with me (I bought buckwheat flour to make my own--it says gluten-free on the package and the site has a clear allergy policy outlined).

slippery elm is miraculous but it apparently gives me mild D, so i need to take small amounts until my body gets used to it. I usually have reflux at work, but the slippery elm kept the reflux away until now, which is amazing. i can't take more tho because I don't want to aggravate the D. altho I prefer D to reflux hands down.

birdie22 Enthusiast

I too have heartburn as one of my major symptoms. I've been gluten-free for two weeks only but the acid hasn't gotten any better. Like you, I find it comes and goes in no discernible pattern. Today it's flaring up 2.5hr after breakfast (coffee, egg, grapefruit), yesterday it was after lunch. My meals are pretty much the same every day (I'm a creature of habit) so it baffles me why it flares at different times.

Here's hoping we both find the cause and solution!

ravenwoodglass Mentor

I tried a 5 food elimination diet for about two weeks, or at least a week and a half, but I didn't improve. I was eating mince beef, white rice, green peas, and sweet potatoes I think. then I switched to red lentils, brussels sprouts, cashews, white potatoes, and eggs. that didn't work either.

Have you tried the rice, peas, sweet potatoes with either chicken or turkey instead of beef? It can take more than a week and a half to two weeks to see a difference at times. If you frequently eat any of the above suggestions then use something else for your starting point. You should start out with stuff you rarely consume even though that usually means a starting point with foods you really don't like.

Strawberry-Jam Enthusiast

when I did the lentils, b-sprouts, potatoes, eggs & nuts diet, it was foods I hadn't been eating before.

maybe I will try sunflower seeds (been eating cashews really regularly, so guess they hafta go), buckwheat, and 3 other things. idkidk. avocados or smth. maybe ham or lamb. I can get ham hocks and fresh pork hearts across the street and make some soup stock with 'em. lamb is just hella expensive is all.

I just want someone to give me a diet that will allow me to test for the most things as possible (fructose, salicylates, nightshades, whatever else coeliacs or GERD peeps can't tolerate) all at the same time. I don't care if I have to eat cardboard every day. I already don't enjoy eating and just do it to survive.

anyone know about going to a doctor about Hcl? I have a huge burping and bloating problem. the bloating is all burps and only sometimes, kinda rarely, is gas coming out the other end. maybe I don't have enough stomach acid and need to be taking hcl with every meal. I will start by taking the enzymes with EVERY meal instead of only the big ones and see if they help??

called my dad and he's talkign to doctor friends. I am calling my insurance tomorrow to see if they would cover another endo or any testing like a stomach acid test or blood tests ( they don't cover pre-existing conditions, so they would not cover a blood test to check on my gluten antibodies ). I know they don't cover doctor visits or prescriptions but it says it covers "reasonable sickness and injury" and surely being unable to eat more than 1000 calories a day is reasonable sickness.

Googles Community Regular

I wanted to add something. When I get glutened I usually get heartburn/reflux as a reaction. For me it only takes a very small amount of CC to make it happen. But the heartburn/reflux can last for weeks. Last time I got glutened I had heartburn for 2.5 weeks, even when I knew there was no other risk of CC. I haven't been able to figure out how to get it away when I get it, but just know that even if you are only getting CC once in a while, it could make it seem constant. At one point when I got glutened worse I had three months of nausea. So even small amounts of CC (mine were from foods that said they were gluten free) can cause long term problems. For me the heart burn didn't matter. It was worse right after I ate, but it didn't require me to eat to get reflux. So know that 1.5 weeks may not be enough time for your symptoms to calm down to make sure your tests are accurate. Good luck finding what is causing your problems.

ravenwoodglass Mentor

I am calling my insurance tomorrow to see if they would cover another endo or any testing like a stomach acid test or blood tests ( they don't cover pre-existing conditions, so they would not cover a blood test to check on my gluten antibodies ). I know they don't cover doctor visits or prescriptions but it says it covers "reasonable sickness and injury" and surely being unable to eat more than 1000 calories a day is reasonable sickness.

Glad to hear you are going to try and get in to see a doctor. Not everything is food intolerance related and you might have something more serious going on. I hope you are able to be seen soon.

Strawberry-Jam Enthusiast

so, I stopped taking the otc pantoprazole because when it was on it i was so bloated and I never felt hungry. now i feel hungry and even tho i might just be reflux-induced "hunger" at least i'm actually eating food again and not just letting breakfast sit in my stomach all day.

started the enzymes again. I'm really thinking my problem is too little acid, but idk. also started my multi again, the one i was using back in the states when i was at my best, even tho it has corn in it. also been taking folic acid because my dad, who has ulcerative colitis in remission (he tested negative for coeliac btw), swears by folic acid for digestive troubles.

new symptom that scares me: a ribbon of red blood in my stool. I am eating nothing coloured red so it must be blood.

(tmi about poop alert) been having burning, sticky, unflushable D every morning, but it's only once a day so i deal by using baby wipes. idk if blood is new or if i only just noticed it today. trying to see if there is undigested food as well and i see it's kinda grainy but you get that from eating nuts and seeds, yeah? and i can't tell if it's oily or not.

Skylark Collaborator

Too little acid makes sense, especially if stopping the acid pill helped.

Bright red blood in a stool is not anything to be frightened of. You're probably irritated from the diarrhea. The dangerous blood from internal bleeding is black and clumpy - supposedly it looks like coffee grounds.

Strawberry-Jam Enthusiast

judging from my symptoms i think i may be malabsorbing fats, or just food in general. that's what a frothy, floaty, yellowy, terrible-smelling D is supposed to mean, right?

which means my meat/nuts diet may be compounding the problem. in all my elimination diets I've never gone low-fat... because I know how good fats are for us. unless, of course, they pass right thru you, I guess.

I'm making buckwheat flatbread right now with a buckwheat flour from doves farm that is guaranteed at least <20ppm (they use a separate mill and packing area for their gluten-free flours). for my weekend trip I will bring this flatbread, my sunflower seed butter, and some boiled eggs, and I will take plenty of digestive enzymes with me and try not too eat too much at once.

I will try to find a doc that can either do the hydrogen breath test for fructose-malabsorption or some kind of stomach acidity test for me. dad talked to a doctor friend who thinks that what i really need is for my hiatal hernia to be operated on (they said it was small and didn't need surgery after my scope, however). if I do need surgery, I will have to leave Ireland for it, and I want to stay for my full year, dammit! so i'm gonna try anything else in the meantime, and if i really do need surgery i will just cope as best i can with antacids or whatever they give me that helps until i can't bear it anymore and have to fly home.

SoyBoy Rookie

Strawberry,

I think eliminating nuts is wise.

Could you post your "banned ingredients" list for soya? I see a couple of items in your post that seem to indicate that your list of soya-containing ingredients is not complete.

Getting your hernia fixed sounds like a great idea as well.

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    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
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