New To Gluten Free - Questions

[Rick-O-Shay]

Hello all,

I am new here. I have not been tested or diagnosed with celiac, however, due to ongoing GI issues and reading a book called, "The Gluten Connection" I have taken it upon myself to simply try it. Since I have new to Gluten Free eating, I have some questions that I was hoping to get answered.

First, a quick background:

I am a 27 year old male that has had stomach issues since my youth. It was attributed to anxiety as I often got sick before doing something. My main complaint was typical IBS symptoms (diarrhea & abdominal pain). After living with stomach issues for many years I went to the doctor. My first test was an upper GI barium swallow which showed nothing. I was put on Nexium and sent home. A few years later I went back. My next test was lots of blood work and an endoscopy. I was diagnosed with Barrett's Esophagus due to acid reflux and an ulcer. I was then placed on Carafate and prilosec. I was told to be on the prilosec for life.... After a couple months my ulcer healed, I guess... I felt better and I was able to enjoy eating without pain.

That was 3 years ago. I stopped taking the prilosec after the 1st year, as a naturopath that I saw told me to take DGL and other supplements. I have ALWAY had dyspepsia symptoms (pain when pushing on the stomach, stomachaches etc...) but nothing else wrong with me. My IBS has shifted from diarrhea to constipation in the last few years. I also had an abdominal ultrasound and a body x-ray with contrast. All came back normal. The x-ray showed retained feces, gas, and constipation. My doctor assured me it was IBS and sent me home. I am now due for another endoscopy which I will get in January.

Now, my ulcer symptoms are back again. I have terrible burning in the morning when I wake up, I feel full after eating little food and it feels like a bowling ball in my gut, I feel sick to my stomach, nausea, and I of course the anxiety is kicking in. I saw the naturopath, who told me to cut all gluten and dairy from my diet to see how I feel.

As many here suffer with Celiac and/or a gluten sensitivity I want to know. Does this sound like a gluten issue?

I don't feel sick after eating bread. I have ate sandwichs all my life and would never say that after eating gluten (within a reasonable time) I would make any kind of connection. I have heard that gluten can cause all my problems...I suppose it's just hard for me to believe that it could cause anxiety (which I am also taking medication for), dyspepsia, GERD, acid reflux, ulcers, constipation, IBS, etc.... Within the 3 years that I had my last scope there were times that I felt good, but had no change in my diet...

Ulcers suck, they hurt. I have searched the internet until I have convinced myself I have every GI issue every discovered. I started gluten free today. I know that they say it can take a few weeks, but I guess I'm looking for some gluten experts here to help me out.

Thanks,

PS - A few years back I had an idiopatic case of cold urticaria. When I placed an ice cube on my arm I instantly got a welt! Very freaky and strange. It lasted only 6 weeks and went away. I looked up cold urticaria and it says it is gluten related, but this was about 4 years ago and I never had it since....

[rosetapper23]

Yes, I think it's very possible you have celiac. I think it's odd that you question whether or not celiac could be causing your anxiety--it's one of the most common symptoms of the disease! Remember, 90% of your serotonin is produced in the gut, NOT the brain. If your gut is malfunctioning, of course, you're going to have neurological problems. You're fortunate to have learned early in life what may be causing your medical problems.

[Rick-O-Shay]

Thank you for you info. I hope to have learned early enough before too much damage was done. Can this go away if I stick to the diet? Ulcers alone take a couple months to heal. I feel over full and nauseous from eating normal portions.

As for the anxiety. I have had that for...as long as I can remember. Night terrors, panic attacks, sick stomach, teeth grinding, the list goes on.

It just seems like a doc would look into this... Especially with an endoscopy.

[Di2011]

I had stomach ulcers when I was 23. I still to this day can describe the pain. Razor blades!

If you don't want/need an official diagnosis you should start gluten-free today. You sound like you could be one who has very serious outcomes from eating gluten, and there is only one way to find out (except waiting for January).

But remember you are suppose to keep eating gluten for test results to be reliable.

So presuming gluten is your poison and you try gluten free now I'm going to sound your Mum or nan or girlfriend or wife or partner: please don't cheat.

It seems to me from reading posts on this forum that PIZZA and BEER seem to be the young male gluten-free/Celiac persons biggest temptation. Tomorrow buy a gluten-free pizza base and make the first one the yummiest pizza you've ever eaten If you are a beer drinker it is time to convert - cider, wine etc.

Seriously, if you cheat big or often you will never really know the answer to your own question. And you could get very very ill. Seriously ill.

Read this one.. there really is no excuse anymore for being gluten-free and hungry:

[BabsV]

It just seems like a doc would look into this... Especially with an endoscopy.

Are you having the endoscopy to biopsy for Celiac disease? If so you must continue to eat gluten until the biopsy. If you are going to go gluten free for several weeks beforehand the results will be skewed. My bloodwork came back high positive but I had to continue eating gluten until the day of my scope (about 3 weeks later)...I considered it my swan song and loaded up on Chinese food and triscuits!

Also, I had serious GERD issues before my diagnosis. In fact the doctors wanted to only consider GERD and then functional dyspepsia (when the PPIs couldn't control symptoms) until a new doctor suggested the Celiac bloodwork as a test of exclusion. All the docs were surprised when the bloodwork came back positive!

I'm still on Prilosec (20mg two times per day) after 3 months gluten-free -- my main doctor is hopeful that as I heal I won't need it or at least will be able to reduce the dosage. I can say that my GERD symptoms are definitely reduced after being on the diet.

Good luck.

[Rick-O-Shay]

Hi, thanks for the reply. No, I am not getting tested for celiac in my scope, only to check on the Barrett's and ulcer. I figure, if I get tested and show positive, I still have to avoid gluten, so why not just do it and see if I feel better.

BabsV, I am glad to hear that after 3 months you are feeling better and that your GERD is going away. My GERD doesn't have a lot of symptoms, but I think all that excess acid is eating holes in my gut. It gives me some hope to hear that it actually makes people feel better!

Thanks again for the info guys. All advice/info/input is welcome.

[rosetapper23]

My son had terrible night terrors and anxiety growing up, and he was diagnosed with celiac at the age of 15. For many people with celiac, neurological problems are their most common complaints--from migraines to neuropathy to ADHD to depression to anxiety (just to name a few). Now, to be honest, though many people's symptoms abate after being on a gluten-free diet, sometimes it takes longer for neurological symptoms to improve. Sometimes, they never completely resolve, but there might be improvement. Don't despair if it takes a while. Most of my symptoms finally went away after 18 months of strictly following the diet, but the neuropathy and some of the other neurological problems never did. I'm 54 years old, though (diagnosed at 47), so I'd lived with the symptoms for a very long time....and everyone is different.

[AVR1962]

Goodness, reading your post I wanted to jump thru the computer and tell you to get off the gluten. I had so so so much trouble with my stomach. Docs are very good about throwing aprescript at you without looking any further and funny how things deadend so quickly when they do take the extra step.

You have described my symptoms as a younger person very well and left unattended it will get worse, to a point of nerve damage like myself. Do yourself a big favor and eliminate the gluten from your diet. Your stomach is going to contniue to need protection....antacids, Pepto, etc. Take the acidic foods out of your diet. Limit your proteins to smaller amounts, less than 4 ounces per serving. If your stomach is really giving you issues, boil your chicken, save the broth for your veggies and/or rice, all very good to help mend the stomach. It took me 5 months of doing this to get to a point I could go off meds for my stomach. Wheat is a food that causes inflammation and creates the stomach to produce more acid to the stomach. If you look up a low acidic diet, wheat is one thing they suggest to limit. Same with arthritic diet, wheat can be the culprit for inflammatory episodes.

[Rick-O-Shay]

Thank you very much for all your info. It is encouraging to hear that I can feel better. I began gluten free 3 days ago, now I guess I just need to give it lots of time.

My main complaints right now are just pain after eating. I eat and I feel over full and I hardly ate anything, then I feel nauseous. This is with any food, including gluten free foods, but like I said, I was diagnosed with an ulcer before, I feel like it is similar pain. They just heal so dang slow.

I would love to be med free. Especially since my dr told me I must be on prilosec for life!

[Rick-O-Shay]

Ok, so here is a question then. Can I have Celiac or Gluten intolerance/senstivity without a bunch of the other commons issues that people have with it?

I don't have any skin issues, lupus, tyroid issues, diabetes, pale/greasy stools etc...

Primarily I have the symptoms listed in my first post:

Ulcers, IBS pain, constipation, anxiety, gas, barrett's esophagus, GERD/heartburn, dyspepsia (constant stomach pain).

[Celtic Queen]

Ok, so here is a question then. Can I have Celiac or Gluten intolerance/senstivity without a bunch of the other commons issues that people have with it?

I remember reading somewhere (probably on this board) that there are about 200 different symptoms associated with Celiac Disease and Gluten Intolerance. And some people don't have any symptoms at all. They're called "Silent Celiacs." So it's definitely possible for you to have gluten issues.

[Strawberry-Jam]

everyone's symptoms are different.

mine, before diagnosis, were primarily untreatable acid reflux (feeling of a solid lump in my throat like choking, difficulty swallowing, irritation at back of tongue, pressure in the chest, heartburn), feeling full after two bites of food, never feeling hungry, stomach emptying slowly, irregular and random BMs (back and forth between C and D). Along with fatigue, headaches, depression.

I was put on nexium and carafate after having gone to a 100% liquid diet and wasting away at less than 1000 calories a day. Carafate helped me to tolerate solid foods against my oesophagus, but nothing controlled my symptoms. tried nexium, protonix, and some kind of new uber-ppi on the market--nothing worked.

I never had the pale, greasy stools until now, actually; I am currently suffering from some coeliac-related complication that I can't figure out and is impairing my digestion of fats. Before, that wasn't much of an issue.

my thyroid has been fine my whole life, and was fine when last tested (less than a year ago). no diabetes. low blood pressure.

do gluten free. give it at least a month. it took about two months for my reflux to subside, but my energy levels rose before that point. (I am having a relapse of reflux at 9 mo gluten free, but from 3 mo till now I was doing pretty well)

[Rick-O-Shay]

Very interesting. I am currently on Carafate and Prilosec, and I feel overfull whenever I eat a normal sized meal. StrawberryJam, this went away for you? How long did you suffer with this before going gluten free?

[beebs]

I had two stomach ulcers as well - no bugs or H Pylori or anything. Severe GERD, haven't had any issues like that since going gluten free.

[beebs]

I remember reading somewhere (probably on this board) that there are about 200 different symptoms associated with Celiac Disease and Gluten Intolerance. And some people don't have any symptoms at all. They're called "Silent Celiacs." So it's definitely possible for you to have gluten issues.

Apparently its 300! We have to be bigger and better than all the other diseases! Haha!

[Katrala]

Were you blood-tested for celiac?

[Rick-O-Shay]

I have not been tested for Celiac, but I have been tested for many other things. I have ulcers but no H. Pylori or other explainations on how I got them other than possible GERD or stress/anxiety. I'm not planning on getting tested, as I already started going gluten free. If I test positive, I still have to be gluten free... I figure I'd save a step and some money.

Beebs - How long did it take for those to go away for you? Ulcers are pretty slow healing. At least mine were.

Sometimes I feel like this constant stomach pain will never go away... I've had it for years.

[Strawberry-Jam]

Very interesting. I am currently on Carafate and Prilosec, and I feel overfull whenever I eat a normal sized meal. StrawberryJam, this went away for you? How long did you suffer with this before going gluten free?

The acute reflux started in about September of my senior year, after one of the most stress-free summers and school-year beginnings ever, which was very strange. It worsened over time until by late November I was on a liquid diet--ensure, which contains soya and dairy and was probably making things worse, eggnog, which is also dairy-laden, and hot chocolate, and ice cream. These last three were purely to keep the pounds from melting off me like butter. Probably not a good idea, since it turns out that I have neurological reactions to dairy.

I was diagnosed with coeliac after my scope & blood tests in February, and went gluten-free then.

Six months, then, in total, from onset of the worst symptoms. However, prior to this I was not symptom-free. It just wasn't bad enough to make me keep going back to doctors over and over.

[AVR1962]

I have not been tested for Celiac, but I have been tested for many other things. I have ulcers but no H. Pylori or other explainations on how I got them other than possible GERD or stress/anxiety. I'm not planning on getting tested, as I already started going gluten free. If I test positive, I still have to be gluten free... I figure I'd save a step and some money.

Beebs - How long did it take for those to go away for you? Ulcers are pretty slow healing. At least mine were.

Sometimes I feel like this constant stomach pain will never go away... I've had it for years.

I was treated for an ulcer, also had terrible GERD. It was so bad that it felt like the whole lining of my stomach had been torn and gasoline thrown in my stomach and a match lit.....it burned like you would not beleive. My stomach was bad. I too would get that full feeling and at first I thought it was because I was eating gluten-free bread and I thought something about that was causing a stuffed feeling. I did stop eating it but I also noticed meats were very hard to digest so I read and found out that when the digestive system is impaired you basically have to eliminate certain foods in order for it to work properly again. I had alot of healing to do in other words.

I was on Nexium twice a day and in between I was doing 2 shots of Pepto. I did this for 5 months before I was able to back off the Nexium. I ate no acidic foods, no spice, no caffeine, no alcohol, and no dairy. Sounds pretty bland does it? but it worked! This all started for me 9 months ago. I still coat my stomach with a shot of Pepto if I have a glass of wine or something spicy but I can actually have a hot wing or two without it killing me now.

The ulcer, for me, was easier to heal than the stomach. The ulcer, I believe, was due to the amount of stress I was under at the time. I actually ended up in counseling and was really trying to use methods to relax and unknot my muscles. That all helped alot. It will go away. I hear you when you ask if it is possible but I lived it. You have to take care of the stomach. Treat your body like a newborn babe and don't put anything careful into your system and you will see a difference.

[mushroom]

It is possible that the overfull feeling and the inability to eat a full meal is due to gas and bloating in your stomach. This was one of my primary symptoms - so much gas there was simply no room for food. I have been a long-term consumer of Gas-X (the gelccaps, not the chewable tablets which have gluten). These help to disperse the gas bubbles and keep things moving through.

If you have not already done so, stop consuming lactose for at least 3-6 months and see if this makes a difference to your gas/bloating. With no enzymes to digest lactose (destroyed at the tips of the flattened villi) lactose will just sit in your intestines and ferment and produce gas and bloating. You may also benefit from some digestive enzymes to supplement what the pancreas is producing, because it sometimes takes a little vacation when presented with too much gluten. Get a full spectrum pancreatic enzyme which will help digest fats, protein, carbohydrate, maybe one that contains bromelain HCL and/or betaine or capsaicin. Present your gut with foods that are easy to digest -- avoid the raw stuff like salads and apples and tomatoes with skins, even broccoli and cabbage (because of the gas) and stay away from baked and refried beans for a while. Anything to reduce the gas

[Di2011]

I have not been tested for Celiac, but I have been tested for many other things. I have ulcers but no H. Pylori or other explainations on how I got them other than possible GERD or stress/anxiety. I'm not planning on getting tested, as I already started going gluten free. If I test positive, I still have to be gluten free... I figure I'd save a step and some money.

Beebs - How long did it take for those to go away for you? Ulcers are pretty slow healing. At least mine were.

Sometimes I feel like this constant stomach pain will never go away... I've had it for years.

Can you clarify:

Were your ulcers specifically diagnosed as being or not being P. Hpylori ? ie you have no specific medical history tied to or tested to Pylori?

What SPECIFIC idea / test etc told you you had stomach ulcers? As opposed to conditions that appeared/felt like you had ulcers?

Tell us what you feel. Where, when, what kind of pain/ache etc .. helps us help you.

[Rick-O-Shay]

Can you clarify:

Were your ulcers specifically diagnosed as being or not being P. Hpylori ? ie you have no specific medical history tied to or tested to Pylori?

What SPECIFIC idea / test etc told you you had stomach ulcers? As opposed to conditions that appeared/felt like you had ulcers?

Tell us what you feel. Where, when, what kind of pain/ache etc .. helps us help you.

I had an endoscopy with blood test for h. Pylori. Both negative. During the endoscopy they saw am ulcer. That was 3 years ago. I now have the same feeling, pain directly above the belly button, feeling full quick, feeling nauseous about 3 hours after I eat, waking up in the morning with intense burning. Basically, my stomach always hurts, lol.