Argghh !. Why Is It So Hard To Find Out What's Happening ?!.

[Manonfire]

Sorry I need to vent a little. Home alone and extremely annoyed.

I've 19 , male , been ill now and underweight for about 6 months. I feel sick at night after eating pretty much anything. Severley constipated for up to 2 to 3 weeks at a time despite a high fibre diet and lots of excerise and water. My skin has gone terrible and I just generally feel horrible.

I went to see a gastroenterologist privately ( after my gp didn't think I needed one ) and he was shocked I hadn't been referred. He said he'd seen people die heavier than me.

He thought I might have had Chrons of Celiac desease and I had an endoscopy and CT scan done as well as blood tests.

After about two months of waiting they told me I had nothing but acid reflux. No way that's all that's going on , no chance.

So I cut out wheat anyway , it's been about 2 months now. Annoyingly I've not felt any better at all and I've not gained any weight whatsoever. In fact I've probably lost it. I still feel ill , get sick after eating , wake up sweating and nearly throwing up every night unless I stay up until around half 5 in the morning and go to sleep only when I'm absolutley shattered and my body literally can't get back out of bed ( it's sad I've learnt this is the only way to actually sleep ).

So here's the reason I'm so mad. My gasterentorologist told me there way absolutley no chance I was celiac and today I went back to my GP after having allergy tests the week before. He said " you have countless possible allergies but a definete allergy to wheat , although you've tested negativley to celiac desease ".

I asked him what the difference was and he said " technically nothing ". I'm sorry but what the hell does that mean ?.

They've requested I start eating wheat again and have blood tests in two weeks. The thing I'm so mad about is even if I am celiac I don't think that's what's making me feel ill. I've cut it out for 2 months now and can't see any benifit whatsoever.

Oh and I was lacking folic acid but now I'm not and I'm lacking B12. As of today haven't been to the toilet for exactly 2 weeks and I'm not taking laxatives since they always make it worse after I've been. Psyillium Husk everyday and fingers crossed I go soon.

This is a nightmare !. I just want to know what's wrong , there's absolutley nothing I can do until I know. I've tried everything.

It's possible i could start eating wheat again for this test , it comes back negative but I am celiac and then I've put it back in to my body and they still wont belive me. This is making me really depressed and I have to literally beg them to get sick notes since I can barely even type on here never mind go to work. and they think I'm just being lazy !. On top of this I've had prostate enlargment and prostatitis since being 12 and that keeps me up all night.

Argh !.

[mushroom]

Hi, manonfire, and welcome.

I am so sorry you are having such a tough time of it, with such frustrating testing results.

First let me say that it is possible to test negative for celiac disease and still be intolerant to gluten. There are many posters on here with negative testing results who have recovered on a gluten free diet. It is also possible to be both intolerant of wheat and allergic to wheat. Gluten intolerance is an autoimmune reaction, not an allergic reaction, meaning that gluten causes the body to attack itself, rather than the body reacting directly as in allergy.

Frankly, if you have already tested negative to gluten, I see little point in eating it for only two weeks and then being retested. It is normally recommended for a gluten challenge that you consume gluten for at least two months (the equivalent of three to four slices of bread per day) before retesting because that's how long it takes to reactivate the gluten antibodies in the blood and to redamage the small intestine for the biopsy (if done).

Now we get to the frustrating part of lack of improvement on the gluten free diet. It is quite possible that you have more than a gluten intolerance, and that this is preventing you from healing. Many of us cannot digest lactose in milk until we heal, some cannot tolerate any dairy at first (or ever). Many of us are also intolerant of soy and corn, and there are lots of other foods like the nightshade family (potatoes and tomatoes among others) that mess us up.

I would suggest that you go to a very basic whole food diet of meat, vegetables and fruit, perhaps rice and nuts and seeds. Make sure to cook all your vegetables, peel the tough skins off any fruits like apple and pear (or maybe cook them too - applesauce, anyone?). If you cannot feel better on this reduce your diet even further until you find things you can eat without problem. Try to get your fiber from fruits and vegetables and drop the psyllium at first. You may have to do some imodium at first to avoid getting too blocked up. Do not eat any processed foods or any grains (you may even have to leave out rice). Try this for a couple of weeks and see how it works for you. Do not drink any sodas or eat anything with artificial sweeteners - no cokes!! Drink plenty of water. Yeah, it sounds pretty blah, but if you can reach that point where what you eat doesn't bother you then you can start adding one thing in at a time and identify the culprits. It's a long process but it is so worth it.

Fire away with any questions, but this is what I would recommend. Others might have some additional ideas.

[Skylark]

I'm so sorry to hear how sick you are. It sounds terrible.

Mushroom covered just about everything I was thinking. Wheat allergy and celiac is nowhere near the same and I don't know why a doctor would say that. Maybe by "technically nothing" he means that both are treated by eliminating wheat, although with celiac you also eliminate rye and barley.

[Manonfire]

Hi guys , thank you for the replies and support. I really appreciate it.

I'm not the type of person to get annoyed easily so sorry if I seemed a little angry in my first post , I'm just exhausted from all of this.

I think cutting out everything other than basic vegetables , some fruits and meat is a good idea. I only really drink water now but I do drink the occasional fizzy drink since I'm always feeling so tired since I'm not getting much sleep feeling ill. I'll stop this completely now , anything that makes me feel better.

I was actually speaking to a body builder ( the difference between us was incredible lol ) and he reccomended I do the same since that was all he ate apart from nuts also. He'd have 6 meals a day and 5 of them were 7oz of chicken ( or two different types of fish per day to mix it up ) and grean beans !.

Obviously I could include more myself but if he can live on this and be as big as he was surely I can do something similar and at least get the body fat back I was missing. At the moment my diet consists of mainly 3 meals.

A tin of beans in the morning ( for the fibre , they apparently contain 15g of it ).

A salad whih has lettuce , raw carrots , hummas ( for the fat ) , sweetcorn , chicken , ocassionaly tomato and spinach ( for the B12 ).

I also add to this avacado when I have them for more fat and fibre too.

The next meal I'd sometimes have later on in the day but not always would be basmati rice with peas , onion and chicken again.

I'm not really snacking on anything anymore as I fear it's going to make me ill. I used to look like a footballer and now I look like a gremlin lol !. I'm scared to eat if I'm honest.

I think from now on I'm going to make my meals much more simple , I think I'm going to request a copy of the " possible allergies " to maybe get an idea or see if anything specific came up that come be the cause.

One thing that worries me that's sort of a catch 22 is that dropping so much stuff out of my diet whilst being underweight might be a bad idea ?.

Could alergies cause weight loss rather that being Celiac ?.

Thanks again for all the help.

[Skylark]

You have so many symptoms I just don't know. Are you eating dairy-free as well as gluten-free? Some celiacs have the same reaction to milk casein as to gluten. Maybe you need a better doctor too.

[Manonfire]

Hi ,

yeah I''ve been gluten free and dairy free now for a while and theres nothing obvious I'm eating that I could see might be causing a problem. Since having two b12 jabs in 2 days now knock on wood I've not felt as sick but annoyingly now I'm having a really hard time catching my breath !. I can't win lol. I got the possible allergy results today from the doctors and they were very similar to what a local chemist said I was intolerant to. The doctors told me not to listen to the chemist yet their results are almost identical.

It's a definite wheat allergy..

Possible dairy ( which I avoid anyway )

Possible walnut and peanut allergy ( which again I avoid anyway ).

I'll update this thread if anything else happens.

[frieze]

Hi ,

yeah I''ve been gluten free and dairy free now for a while and theres nothing obvious I'm eating that I could see might be causing a problem. Since having two b12 jabs in 2 days now knock on wood I've not felt as sick but annoyingly now I'm having a really hard time catching my breath !. I can't win lol. I got the possible allergy results today from the doctors and they were very similar to what a local chemist said I was intolerant to. The doctors told me not to listen to the chemist yet their results are almost identical.

It's a definite wheat allergy..

Possible dairy ( which I avoid anyway )

Possible walnut and peanut allergy ( which again I avoid anyway ).

I'll update this thread if anything else happens.

taking that much B12 make sure you are getting ample potassium

[Manonfire]

Up at 2 am and feel like horrible again , like I'm dying.

I feel really sick , I'm shaking , my heart is pounding , my stomach is hurting.

How I hate moaning on an internet forum but when I haven't got a clue what's going on and the doctors don't either what else can I do ?!.

I've been trying to eat more to gain weight but end up feeling ill. I've ate no wheat , dairy or anything that I think could cause me problems for days now. I also feel like my emotions go really haywire , like I suddenly feel like there's no point in being alive and that I'm about to die and start panicking. I feel like I want to burst into tears. I'm not like that at all when I feel normal. This is driving me insane !.

Can full allergy testing be done , for things like lettuce , beans and more obscure things ?, since I only had a basic test for the few most common things.

I'm thinking it might not even be linked to what I'm eating anymore. I have acid reflux , I'm not sure if I mentioned that and I tend to feel a little sick after eating but the way I feel now after not eating for hours it can't be that. I feel too bad , it's not that simple.

I was thinking anxiety since I've noticed some days when I get excited or look forward to something the next day , I'll wake up in my sleep feeling like this or not get to sleep at all. Then again it can happen when I'm doing nothing at all the next day , or even the next week so to be honest I've got no idea whats going on.

I'd go and see a specialist but a specialist of what ?.

Urghh..

[mushroom]

I do feel your pain. Can you tell us what you are eating??? Sometimes there is a clue there. And for some of us the journey is longer than for others. I have an intolerance to lectins as well as to gluten, and you will see the things I have eliminated in my signature. That should also include quinoa and today I added amaranth to it, so it looks like all the high nutrient grains are gone. I have had the pounding heart, the shaking, the pains in arms, shoulders, hands, the heart irregularities (have ended up in hospital with atrial fibrillation that won't quit) etc, Some of us have to keep food on our stomach by eating many small meals - I know I do, or my stomach starts digesting itself and producing bloat. Don't know if any of this is helpful,, but do know that many of us have fought through these apparently insoluble food intolerances to find out exactly what they are and what helps. The doctors don't know -- you are really on your own here. That's why it's best to eat as few foods as possible to find something you tolerate and then add things back in one at a time.

[cahill]

I do feel your pain. Can you tell us what you are eating??? Sometimes there is a clue there. And for some of us the journey is longer than for others. I have an intolerance to lectins as well as to gluten, and you will see the things I have eliminated in my signature. That should also include quinoa and today I added amaranth to it, so it looks like all the high nutrient grains are gone. I have had the pounding heart, the shaking, the pains in arms, shoulders, hands, the heart irregularities (have ended up in hospital with atrial fibrillation that won't quit) etc, Some of us have to keep food on our stomach by eating many small meals - I know I do, or my stomach starts digesting itself and producing bloat. Don't know if any of this is helpful,, but do know that many of us have fought through these apparently insoluble food intolerances to find out exactly what they are and what helps. The doctors don't know -- you are really on your own here. That's why it's best to eat as few foods as possible to find something you tolerate and then add things back in one at a time.

When I eat amaranth I get pains in the middle of my chest,,feels like i am having a heart attack. Totally isolated to amaranth .

Quinoa upsets my stomach no matter how well I rinse it .

[IrishHeart]

You sound like me six months ago. Including being up all night with pain, crying and feeling like death from malabsorption. Both a folate and B-12 deficiency can cause major anxiety, depression, insomnia, heart palpitations and fatigue.

I trust you are having those treated? Hang in there because it takes a few months to reverse those deficiencies.

Okay, here are a few suggestions that worked for me. I was a MESS of GI BURNING from mouth to you know where and could not sleep more than 1 or 2 hours a night for over a year. I was "revved up" 24/7 shaking and feeling as if I would go mad. I either had chronic diarrhea or constipation that made me suffer with pain.

Now, for the first time in my life, I am "normal". Maybe this will help you.

Avoid RAW veggies for now. I know there are people who are raw foodies and they are very healthy, but right now, your GI tract is really upset and even those will cause digestive upset. Hubby even bought a juicer and I tried to drink raw juices when I was emaciated and no food would stay in me--and that was like pouring battery acid down there. Until the GI tract heals, anything may be an irritant.

No coffee, tea or chocolate, citrus or tomatoes. Just for a while.

Take probiotics. Make sure they are gluten-free and DF. They helped me get "regular". No need for psyllium. (Some psyllium powders have CC issues with GLUTEN BTW.) The reason why probiotics help is because leaky guts have an imbalance of gut flora.

Try digestive enzymes. They help with protein, carb and fat absorption. Take them before each meal.

BEANS are very difficult to digest and eating them from a tin for breakfast may be just too much right now. Hold off on beans for a bit.

Drink a LOT of pure water. This will help your sluggish bowels more than anything else. I mean .... half your body weight in ounces a day!!! Stop at 7PM so you aren't getting up at night.

Eat plain chicken, rice, steamed veggies, sweet potatoes baked in the oven (wash them, pierce with a knife, & put them in a baking dish because they will ooze juice)--350 degrees for 1 hour until fork tender.

Avoid spices.

Eat small portions of protein blanced with a carb (like almond butter on a peeled apple, for example) a few times a day. This will keep blood sugars balanced and your body fueled.

I suffer from massive muscle mass lost from this disease and I am trying to regain it. I try to eat a lot of protein. But my rehab will take years. I work with a physical therapist and a massage therapist. You are much younger than I am and will likely see results much faster!

There is a definite link between bladder probems, IC, pelvic floor pain and prostatitis and gluten. Since diagnosis and eliminating gluten, my severe pelvic and bladder pain has dimished greatly. But I still suffer from burning pain and weak muscles and have nerve pain in areas that are "delicate". The PT says that's inflammation and will die down in time. She treats both men and women with pelvic pain and prostatitis and IC and sees a definite link with gluten intolerance. There are some articles that suggest bowel swelling pushes on those muscles, tissues, organs and ligaments and when the inflammation from the gluten stops, so does the pressure and pain. Perhaps this would also give you relief from the prostate pain. Hope so!

Focus on pure water, pure fruits and veggies and good protein, protein, protein.

This is no quick fix, I know---it took me many months for the bowels to become "normal". But THEY DID!! I have no more acid reflux either. I was treated witrh drugs for that and "irritable bowel" for over 12 years and nothing worked--- until I was FINALLY DXed and took out gluten, dairy and soy. I still have issues to resolve, but at least things are healing.

You can do this! Hang in there and let us know how you are doing.

[Manonfire]

Well I've been having a vegetable and chicken diet , just lots of it for the past week or so and last night I woke up with my stomach on fire. Something I've never experienced before. Almost as if my stomach was dipped in acid. I was in pain through the night but managed to fight through it and eventually get back to sleep.

I ended up waking up at 2pm feeling better since I fell asleep so late. I was starving but scared to eat anything , I ate a small gluten free , dairy free choclate bar since I didn't want to eat anything big and to be honest because I dind't feel like preparing a meal. 10 minutes late my stomach is on fire again. I'm gonna run out to a walk in clinic now and see what they say.

I have a follow up appointment with my gastroenterologist in September but I really need to get it pushed forward I think. Regardless of my diet things seem to just be getting worse day by day. I'm updating this thread to hopefully look back one day and be able to post that I've worked everything out and feel better. I can't belive how I used to take my health for granted.

I'm blaming myself recenetley for the diet I used to have. It wasn't bad but if I'd have known this was going to happen I'd have lived like a monk or something lol !.

[quilteddoll]

I can understand your frustration. I was not diagnosed as being celiac, until the age of 32. I was diagnosed on symptoms alone; all of my tests that they did at that time were negative even though I was a full blown celiac. The biopsy was not done until I was on a gluten free diet for 5 years. No way was I ingesting gluten for anyone. I wish I could tell you that you will find answers right away. If going on a gluten free diet relieves most of your symptoms; do it, but you must be diligent and eliminate all gluten , including medications and cross contamination. This is very frustrating for someone starting out so do join gluten free support groups . I have been gluten free for 25 years and still must be diligent. Hang in there .

[shadowicewolf]

i think part of the problem is that you do have acid reflux (thus the acidy feeling stomach). You need to try to eat something startchy (sweet potatos/banana/etc), and to eat often.

Its a pain, i know, but once you can figure out what it takes to get it under control, it'll help.

[IrishHeart]

Well I've been having a vegetable and chicken diet , just lots of it for the past week or so and last night I woke up with my stomach on fire. Something I've never experienced before. Almost as if my stomach was dipped in acid. I was in pain through the night but managed to fight through it and eventually get back to sleep.

I ended up waking up at 2pm feeling better since I fell asleep so late. I was starving but scared to eat anything , I ate a small gluten free , dairy free choclate bar since I didn't want to eat anything big and to be honest because I dind't feel like preparing a meal. 10 minutes late my stomach is on fire again. I'm gonna run out to a walk in clinic now and see what they say.

I have a follow up appointment with my gastroenterologist in September but I really need to get it pushed forward I think. Regardless of my diet things seem to just be getting worse day by day. I'm updating this thread to hopefully look back one day and be able to post that I've worked everything out and feel better. I can't belive how I used to take my health for granted.

I'm blaming myself recenetley for the diet I used to have. It wasn't bad but if I'd have known this was going to happen I'd have lived like a monk or something lol !.

Okay, let's try and figure this out.... you had a strict veg and chicken diet for a week and --did you feel any better? and that's it? that's all you ate--chicken and vegs?? any liquids? then, it burned again--so what did you eat/drink THAT day to provoke it? spices? coffee or tea? OJ?

Try writing down what you are eating so you can see what's creating the problem.

I just re-read your original post--you said you avoid WHEAT--but you realize that GLUTEN is also in rye and barley, right? Something that says it is wheat-free is not necessarily gluten free if it has malt or rye or any other hidden gluten in it. You have to be strict about label-reading and that is why PLAIN food is best at the beginning to get your stomach/bowel issues under control.

No point in beating yourself up for the "past" diet you had. I did the same thing, but the truth is---we can't change the past, control a genetic predisposition to gluten sensitivity or feel "guilty" over things we had not control over. Let that go, hon!

You CAN control your diet now and I think I mentioned chocolate was a rough one for stomach acid. I know you do not feel like cooking when you feel so rotten (me, too) and I know you want a quick fix, but seriously??? Gluten-free products, especially ones with chocolate are NOT going to help heal your sore stomach.

Try avoiding specialty made products as they have many ingredients (like soy or corn, gums) that may not be easy for you to digest just yet.

Plain foods. Digestive enzymes. Water.

Many celiacs actually have too little stomach acid, not too much, but the symptoms are the same.

I know it is difficult. My stomach/throat burned so bad and I wanted to die . It was like having a heart attack every day. Doubled over and awake all night. Gruesome. For 3 years. No acid reducing medication helped one bit. After I went gluten-free and started to eat more PLAIN foods (no citrus, coffee, chocolate), used digestive enzymes and probiotics, it stopped. It took some time to get it to stop, but it stopped.

What did they say at the walk-in clinic?? Probably, take tums or prilosec??? Unfortunately,they symptom-treat in this country, never solve the CAUSE. They will just say your tests results are "fine". We ALL heard that rap.

As I--and the others-- have suggested to you, it may take some time for you to get to a place where the inflammation dies down, but you have to be diligent about what foods you are eating and what is provoking the response.

Hope you feel better soon.

[Manonfire]

Hi everyone.

Thanks for the replies. IrishHeart , I really appreciate that reply also.

I'm up again now at almost 3am with my stomach burning and feeling sick again since about 11.

I didn't end up going to the walk in clinic that day , I was about to leave and just thought to myself " what's the point ".

I did go to my GP's today though and she examined my stomach and had a little chat with me. I told her all of my syptoms and everything that had been going on. it was a doctor I don't normally see.

She thought the burning belly pain could be acid reflux but like most doctors ( and I suppose as much as I hate to say it , understandably ) didn't really know what was going on. She said she'd write a letter to my gastroenterologist and said that I should also phone his secertary myself in the morning also.

Like Irishheart mentioned I will start a log of what I'm eating and see if anything matches up. I did notice today I haven't ate as much and whilst I've still had symptoms they've not been as horrible as they sometimes are. What worries me though is that it could be the fact that it isn't what I'm eating but the fact that I'm eating that's making me ill.

I THINK I've been avoiding gluten but honestly not being sure 100% what's wrong with me I haven't put 100% effort into staying strict and being 100% positive. I am certain though I haven't had any wheat for a few months and I've only gotten worse since which is also even more frustrating.

I also went to see a pain doctor today who I've been under for several years for my prostate and he was surprised at how much weight I'd lost and could see it as soon as I'd walked in the door ( even though I've been wearing long sleeved tops so people wouldn't notice as much ). He asked what had happened and I told him everything and he said he thought it sounded like an inflammatory bowel disease or celiac.

I'm struggling to think my problem is Celiac now if I'm honest since I think I've been avoiding gluten and I've actually gotten worse. It can't hurt to try altering my diet though so I'll give it a shot from now on.

I've been taking probiotics for a few weeks now although I've not tried digestive enzymes so I'll have to look into those.

Also I'm having a really hard time finding things to eat that are gluten free , dairy free , nut free and don't aggrivate my acid reflux. The worst meal to figure out is always breakfast.

On top of this I've got to worry about gaining weight back and not loosing any.

I'll update the thread soon. It helps me to write in here , makes me think a little clearer and go over everything again.

Thanks for listening too everyone , I probably sound like a broken record lol !.

IrishHeart , when you said you were up with burning in your stomach and throat was that through acid reflux , meaning to much acid or were you struggling with like you mentioned not enough stomach acid ?.

Is it common for celiac disease to cause any problems such as B12 defeciency , allergies or maybe even prostate problems ?.

Thanks.

[anabananakins]

I'm really sorry you feel so ill and I hope you feel better soon.

My breakfast tip is hardboiled eggs and hummus. I take the yolks out because I'm trying to lose weight (and don't like the taste). The hummus cuts the egg-y taste and adds in some calories which you need.

B12 deficiencies are extremely common with celiac.

Most of us seem to get more sensitive to traces of gluten the longer we are gluten free. If you're sometimes gluten free, and sometimes getting traces, this could be part of the problem. I really encourage you to be completely 100% about it and see how that makes you feel. Though being gluten free will make celiac testing results unreliable.

All the best!

[IrishHeart]

Okay, let's start over again!

ARE you eating gluten at all? rye? wheat starch in prepared products? Barley? hydrolyzed wheat fillers? Because not being --as you say 100% strict--will keep the autoimmune response going and keep you ill.

Trace gluten is still gluten.

Did the endoscopy by the GI include biopsies? If not, there is no way in hell the GI can declare you are not a celiac. Just having a "Look-see" down there will not reveal a thing about villous atrophy. And some people have negative biopsies too---because of the extent of damage and/or biopsies are taken from the wrong place. In the end, testing may prove unhelpful and the only treatment/resolution is a gluten-free diet anyway!

Yes, celiac (and non-celiac gluten intolerance) is associated with acid reflux, constipation , major weight loss, lost muscle mass, allergies, B-12 deficiency and dozens of other conditions and autoimmune diseases. An "allergy" to wheat is not known to cause such reactions. Do you have trouble breathing after ingesting wheat? hives? swollen eyes? closed throat? You CAN have both an allergy to wheat and an intolerance, but gut issues, and vitamin deficiencies etc. come from the intolerance to GLUTEN in wheat, rye, barley and in some cases, cross-contaminated oats.

You need to understand that there is a big difference between allergies, intolerances and full-blown celiac disease. Read up on wheat allergy vs. intolerance and celiac here:

Open Original Shared Link

Here is a link to over 300 symptoms of celiac disease and gluten intolerance. Read it, print it off, circle ALL your symptoms and bring it back to your doctor:

Open Original Shared Link

You have many symptoms going on, kiddo--and yes, they may very well be related to GLUTEN. There is no question that you're in pain and suffering and so, you have to get to the bottom of it.

Keep a food log. Eat PURE, WHOLE foods. NOTHING from packages. PURE water. Use digestive enzymes--but MAKE SURE THEY ARE GLUTEN FREE !! Check all your vitamins.

In answer to your question about heartburn pain, some people actually have reduced stomach acid --I think I am one of them--as heartburn medications tended to make things worse for me. I stopped taking them and I felt better. There is a test for this as well. Ask you doctor about it.

Keep persisting until you find the cause of your pain and weight loss. I wish you luck.

[starrytrekchic]

Are you sure the chicken is wheat-free? Some meat processing companies use wheat as filler to plump up meat, including chicken.

[Bubba's Mom]

I just wanted to add..check your toothpaste ingredients, spices that you cook with, are your pans/utentils, cutting board, toaster new or never been used with gluten?

Are you handling pet food that may contain gluten?

Are you eating small amounts of food at a time so you don't overload your angry digestive system?

Just a few more things off the top of my head. We want you feeling better!

[Manonfire]

Okay, let's start over again! ARE you eating gluten at all? rye? wheat starch in prepared products? Barley? hydrolyzed wheat fillers? Because not being --as you say 100% strict--will keep the autoimmune response going and keep you ill.Trace gluten is still gluten.Did the endoscopy by the GI include biopsies? If not, there is no way in hell the GI can declare you are not a celiac. Just having a "Look-see" down there will not reveal a thing about villous atrophy. And some people have negative biopsies too---because of the extent of damage and/or biopsies are taken from the wrong place. In the end, testing may prove unhelpful and the only treatment/resolution is a gluten-free diet anyway! Yes, celiac (and non-celiac gluten intolerance) is associated with acid reflux, constipation , major weight loss, lost muscle mass, allergies, B-12 deficiency and dozens of other conditions and autoimmune diseases. An "allergy" to wheat is not known to cause such reactions. Do you have trouble breathing after ingesting wheat? hives? swollen eyes? closed throat? You CAN have both an allergy to wheat and an intolerance, but gut issues, and vitamin deficiencies etc. come from the intolerance to GLUTEN in wheat, rye, barley and in some cases, cross-contaminated oats.You need to understand that there is a big difference between allergies, intolerances and full-blown celiac disease. Read up on wheat allergy vs. intolerance and celiac here: Open Original Shared Link is a link to over 300 symptoms of celiac disease and gluten intolerance. Read it, print it off, circle ALL your symptoms and bring it back to your doctor: Open Original Shared Link have many symptoms going on, kiddo--and yes, they may very well be related to GLUTEN. There is no question that you're in pain and suffering and so, you have to get to the bottom of it.Keep a food log. Eat PURE, WHOLE foods. NOTHING from packages. PURE water. Use digestive enzymes--but MAKE SURE THEY ARE GLUTEN FREE !! Check all your vitamins. In answer to your question about heartburn pain, some people actually have reduced stomach acid --I think I am one of them--as heartburn medications tended to make things worse for me. I stopped taking them and I felt better. There is a test for this as well. Ask you doctor about it.Keep persisting until you find the cause of your pain and weight loss. I wish you luck.

I'm 99% sure I'm not eating any gluten. My diet only consists of a few things now.

Green beans , lettuce , sweetcorn , beans that say they are gluten free ( but I'm not eating these now anyway because of the acid reflux ) , potatoes , egg , gluten free bread , bacon ( again not much anymore because of the acid reflux. I think that's it.

It's a really limited diet really and I'm finding myself to be starving everyday but scared to eat , with all the allergies and acid reflux on top of avoiding gluten it's a real challenge. I've noticed because I'm not getting many carbs Ive got no energy also.

When they did an endoscopy they did take a biopsy , how many I'm not sure but I'm going to find out when I get my appointment with my gastroenterologist , which it's looking like I wont be getting forwarded.

Are you sure the chicken is wheat-free? Some meat processing companies use wheat as filler to plump up meat, including chicken.

I've been buying the same chicken for years and I've just had a look on the packaging and it doesn't mention anything regarding gluten , wheat or even allergies so I'm not sure. I'll have to try and look deeper into it.

I just wanted to add..check your toothpaste ingredients, spices that you cook with, are your pans/utentils, cutting board, toaster new or never been used with gluten?Are you handling pet food that may contain gluten?Are you eating small amounts of food at a time so you don't overload your angry digestive system?Just a few more things off the top of my head. We want you feeling better!

I've just changed my toothpaste to another but neither of them mentioned gluten. I'm going to have to really have a good look at everything next time I'm shopping.

Another thing I'm noticing is this gluten free stuff is so expensive !. For example a small loaf of gluten free bread is

[IrishHeart]

My pans , utentils, cutting board and toaster do get used by my mum and she eats wheat so I'll have to be really careful with this now too. It can take a long time to start feeling better and because I'm not even sure if I'm celiac how long do you guys think should I wait before I start to try something else ?.

I suppose it wouldn't hurt to stay gluten free for good ecspecially since I have an allergy and intolerance to it but it's a lot harder to gain weight like this and I literally look like a skeleton.

OMG!! Here is the problem!!!!

You are being cross-contaminated (CC) every day, hon! There is no way you will heal if you share these items with a wheat eater!!!! You have got to read about CC and stop it immediately. Whether you have an allergy, an intolerance or celiac--you will never heal with CC going on. It is just that simple--if it is a gluten issue.

[Manonfire]

Yeah , it will be a problem.

To be more specific I don't use a toaster because I haven't been using one since going wheat free. A chopping board I do use and obvious pans and other things similar so I suppose I'll be buying all that stuff new. I feel sick again now , it always seems to get ten times worse at night. I'm not sure if that's because I have acid reflux.

I've just took an ant acid but they don't seem to do much good and make my stomach feel a little strange.

If it is acid reflux what I find strange is the fact that I feel like this despite what I eat. My stomach burns and I feel really sick. As mentioned this has been a lot worse in the last week and seems to be just carrying on.

Something I don't think I've mentioned is that just before I started getting ill the end of last year I took an antibiotic for my skin called " tetracycline ". Now towards the end of using it I started to feel sick so stopped it early. Frustratingly enough it didn't help me in anyway at all and I'm guessing they might have caused or at least made my acid reflux worse. I really regret taking that drug.

When I was given two B12 shots last week there was 1 or 2 days when I strangely felt great and I actually went to the toilet 4 days in a row ( which for me is a miracle lol ). I've read that low acid levels in the stomach can cause B12 deficeincy and maybe even acid reflux ?.

So I'm wondering if when I've had the endoscopy and they've seen acid reflux could that mean I have low acid production instead of too much ?. Is this still called " acid reflux " and would doctors see a difference upon inspection ?.

If I do have low acid levels ( maybe caused by celiac disease ) why would acid go back into the esophagus if there isn't enough in my stomach ?.

Sorry , this is all getting compliacted now lol.

One more thing I'd like to mention seeing as though I'm going all out and you guys have been so helpful.

I was on antibiotics for 2 and a half years straight when I was 13-15 for my prostate problems ( which they think were caused by constipation ) and then as mentioned after taking the tetracycline I felt a lot worse.

I read Candida overgrowth can be caused by antibiotic abuse ( so to speak ) so it would make sense if I had candida overgrowth and then took antibiotics I would feel worse.

I asked my doctor to do a stool sample a few weeks ago and he brushed candida overgrowth off as an overblown myth and said it's only common in people with an auto immune disease ( which is what celiac is anyway as I understand it ).

I'm going to push more to get a stool sample done and in the mean time try my best to take as little medication as possible , I'd rather suffer short term than ruin my body with more stuff and never find a cause.

Thanks again everyone.

[IrishHeart]

Okay, you keep revealing things that are possible clues to your continuing stomach pains. I personally cannot tolerate antibiotics in my gut. It hurts like heck.

YES! prolonged use of antibiotics will make for a leaky gut and gut flora imbalances. That is exactly what happened to me. They kept "treating" my diarrhea with antibiotics, suggesting I had a giarrdia infection (WRONG!!)and never suggesting PRObiotics or what to do to heal. So, for several years, I just kept getting worse. Idiots!

It is possible you have canidida or a small bowel bacterial overgrowth, despite what your GI has told you. They always deny anything like this exists--yet look at all the people on here who suffer. So, what DOES this doctor think is going on? Certainly, he sees your massive weight loss??? (then again, I dropped 90 lbs. without trying and no one seemed to find that alarming except hubby and me)

You may have more things going on than just a gluten intolerance.

You may need to find someone who can help you get to the root of the problem. Digestive Stool sample testing is a good start. From some things you say, I am assuming you are not in the US? Do you have access to naturopathic doctors or integrative doctors? They will run tests like these.

Aside from all the advice I have given you, kiddo, I'm about out of ideas. Sorry. I was certainly in the same kind of burning pain as you describe --and the probiotics, gluten-free/SF/DF and plain foods diet, avoiding processed foods and sugar has helped me immensely. I have a long way to go--celiac has done a lot of damage to me--yet I know healing takes time.

You may not feel well just yet but I do hope you continue to improve. The burning "acid" feeling took a while to clear up in my stomach/gut. If antacids are NOT quenching the fire, something else may be causing this pain. Again, there are tests for determining stomach acid levels. I am just offering ideas to you and there's no way any of us can "diagnose" you. Wish we could!

I hope you find your answers soon. Do not give up! Best wishes.

[mommida]

Sorry to play doctor online, it was a lot more fun as a kid

Diagnosed with GERD, but what was the Eosinophil count? You are describing Eosinophilic Esophgitus symptoms. It is now being diagnosed more often but still not as often as it should be in some cases. Sometimes the Eosinophils are imbedded in "normal" looking tissue. Eosinohils are active for 12 DAYS once activated by a "trigger" food or airborn allergen. If you really could remember back almost 2 weeks to the meal that contained a 'trigger" that would be quite the trick. Start making a food journal. (For practice, don't remove anything from your diet yet.) Ask what the count was from your first scope (It may not have been screened for Eosinophils.) Adult diagnoses goes by how high the count is.

There are other possible things going on in your situation. H.Ployri, parasites,hernia, and so many more I can't remember. Good luck, but get back to the doctor ASAP.