Help Please

[Guest Nukapai]

All I can say, think, FEEL right now is OWOWOW! My stomach is burning, I'm burping, I have diarrhea, I feel nauseous ... in other words after what I thought were my 4 first gluten free days, I must either have accidentally ingested gluten, or I might be getting the same reaction as to gluten from wheat also (because I ate some gluten-free wheat), OR my "mystery illness" has nothing to do with celiac disease.

Anyone have tips on what to do/take in face of an acute attack like I'm having right now? I took diarrhea medication with water, but even that literally *burned* on its way down. When I drink water, it hurts.

Of course I now also have palpitations and although I was meant to return to work today after two weeks' sick leave, I can't (and that makes me feel even worse - I have never taken sick leave like this!).

Tonight I have to go out for couple of hours no matter what, so I just need to try and normalise myself.

I need to see my doctor as soon as possible, but I might not make it out of the house during surgery opening hours today, so it'll probably be tomorrow. When he signed me off for two weeks, he didn't take any new tests because we both assumed that I was just having my usual IBS, except this time really badly.

[catfish]

because I ate some gluten-free wheat

I've never heard of this, I'm pretty sure there's no such thing as gluten-free wheat. I know that there is "low gluten" wheat starch that has been highly processed, but even that has some gluten in it, and there is no naturally occuring wheat without gluten in it. Where did you get the wheat from?

When I feel bad, I sip chamomile and take immodium if necessary. I'll eat nothing but rice (maybe flavored with chicken stock) and try to sleep if I can until I feel better. Other than that, there's not much that I've found that can really help me.

[tarnalberry]

hmm... a burning esophogus is a bad thing. perhaps there's a reflux issue? (though I agree that I've not heard of gluten-free wheat outside of CODEX wheat starch, which we still find controversial in the US)

if it's an acid issue, you might try drinking some "basic" (I mean pH, not "single ingredient") liquids (milk, if you can have it; soy milk) or even try an antacid? I don't know if that's a good idea though, and you may want to consider going directly to your doctor with this particular symptom.

[hapi2bgf]

You can try the baby BRAT diet. Eat only Bananas, Rice, Applesauce, and dry toast (gluten-free Bread only). That should help stop the diahrrea. As for the burning in the throat, I have no idea.

gluten-free wheat?? Never heard of that one. May want to do some more research before you eat that again.

Good luck

[Guest Nukapai]

Apparently there is such a thing that is at least marketed as gluten free wheat:

Open Original Shared Link

I had a similar product yesterday (not the one described in the article) - just some gluten-free white bread that was mostly corn starch mixed in with wheat starch.

I did have some hummus and tomatoes as well, but I've never had a problem with those before.

Thanks for the tips, guys. I went to the doc and he suggested I should avoid anything with high fibre for a bit too, to let my digestive system calm down.

When I asked what I should be eating, he said: "anything you can tolerate should be fine."

The only thing I felt like eating tonight was mashed potato. So that's what I'm having. And some weak black tea with nothing added.

[tarnalberry]

Yep, that the CODEX wheat starch there that you're referring to. It's still a controversial thing among celiacs, and among American doctors, though European doctors seem fairly accepting of it. Again, while it's gluten-free in theory, in practice, it is NOT 100% gluten-free. CODEX believes it's gluten-free enough to not cause reaction, but that can vary by individual. I definitely suggest taking it out, and seeing how things go.

Mmm... mashed potatoes. Sounds nice an easy on your stomach. Should help sop up extra acid as well, as I recall...

[Guest Nukapai]

Yeah, I managed a small bowl of mashed potatoes and it has actually eased the burning sensation some, although I still feel pain and my stomach appears inflamed. Feel a lot better than earlier though.

I see what you mean about the codex product ... well, I guess I have a lot to learn if celiac disease is indeed what I have.

Someone on another forum I frequent has just spooked me by saying "IBS often develops into crohn's disease" and I don't like the sound of that at all. Compared to that, celiac disease sounds almost okay, at least there's a reasonably straight forward solution!

I am getting a bit concerned though, having some anal bleeding and piles now (sorry, over-share, I know, but *shrug*). Could just be because I've had one too many diarrhea episodes.

[catfish]

I don't think IBS can develop into Crohn's, but it can mask it or be misdiagnosed from it. The symptoms are pretty much the same, so often an IBS diagnosis will later turn into a Crohn's diagnosis, but only because it wasn't correctly diagnosed the first time. At least that's my understanding of it.

For some of those touchy symptoms, I find this IBS forum is very useful;

Open Original Shared Link

They all have unpleasant symptoms so there's almost no symptom that's too... personal... to discuss. My recommendation is a warm sitz bath (just enough water to sit in). And too many episodes can certainly cause that problem.

[Canadian Karen]

When my stomach gets really bad, the only thing that will calm it down for me is my heating pad and rocking back and forth.

It always settles it down after around 10 minutes.....

Karen

[Guest Nukapai]

I don't think IBS can develop into Crohn's, but it can mask it or be misdiagnosed from it. The symptoms are pretty much the same, so often an IBS diagnosis will later turn into a Crohn's diagnosis, but only because it wasn't correctly diagnosed the first time. At least that's my understanding of it.

For some of those touchy symptoms, I find this IBS forum is very useful;

Open Original Shared Link

They all have unpleasant symptoms so there's almost no symptom that's too... personal... to discuss. My recommendation is a warm sitz bath (just enough water to sit in). And too many episodes can certainly cause that problem.

Thanks, Catfish! First, off topic: we have a large-ish catfish in a tank (alone, because it ate the other fish ) upstairs in our "pet room"!

Right, about my IBS "diagnosis" - I was never tested for it. I had a horrible v/d/cramps episode about 8-9 years ago and my doctor at the time just classed it as IBS, gave me some Colofac medication and fibre drinks and that was that. The fibre drinks just made me feel ill, so I skipped those and took the other meds. Ever since then I've self-controlled the IBS by taking peppermint tea first thing every morning and peppermint oil capsules if I feel my insides beginning to knot up.

The thing is, I've had the following symptoms develop and pile up on top of oneanother over the years, since childhood:

As a child: I was lactose intolerant from birth, colicy, always upset stomach, bruised really easily (still do, I don't know where all my bruises have come from half the time!)

As a teenager: suffered from excess gas, lots of toncilitis episodes, anemia and episodes of depression

As a young adult: diagnosed with IBS, developed a phobia, had hormonal problems

As an adult: developed general anxiety disorder, depression, chronic over-active mucus production in my sinuses leading to severe chronic catarrh (being looked after by an ENT specialist for that, still no joy in finding out what is causing this). chronic tendon pain and inflammation, severely debilitating migraines (which involve sickness), shortness of breath, dizzyness (with occasional loss of conciousness), mild asthma, hair loss, rash on my arms that doesn't clear with any kind of medicated cream, several infections (bladder, sinus, throat) in a three month period this spring requiring antibiotics - and now, recently, this awful three week episode of burning pain in my stomach, trachea, and crampy intestines w/diarrhea, nausea, terrible fatique and weight loss.

Something is NOT right with me and I am getting so tired I'm almost suicidal. Hence my doctor has put me on anti-depressants.

[catfish]

Right, about my IBS "diagnosis" - I was never tested for it. I had a horrible v/d/cramps episode about 8-9 years ago and my doctor at the time just classed it as IBS

Bad doctor, Bad! IBS is a diagnosis of exclusion, which means that it is supposed to be diagnosed only when everything else has already tested negative; that is to say, your intestines appear to be physically "normal" but you still have symptoms.

As a child: I was lactose intolerant from birth, colicy, always upset stomach, bruised really easily (still do, I don't know where all my bruises have come from half the time!)

All possible indicators of Celiac. Bruising can be a problem if your body is unable to absorb enough iron due to intestinal damage. A lot of celiacs are LI because the damage to their intestines prevents them from being able to digest lactose, thus it remains in the gut and ferments, causing the next problem you mention;

suffered from excess gas

Most of the general symptoms you go on to list can all be related to the damage caused by gluten, not just in your intestines but throughout your body and more specifically your compromised immune system. This one especially stands out as a Celiac symptom;

rash on my arms that doesn't clear with any kind of medicated cream

Sounds like Dermatitis herpetiformis, which is caused by gluten intolerance and can be enough all by itself to get a Celiac diagnosis in some people. I'd say you are definitely a good candidate for trying the gluten-free diet, and while you may not notice dramatic improvement overnight (some do, most don't) if you do have Celiac you will see improvement on this diet. For me it has been slow improvement, but the first thing I noticed was a LOT more energy after just a couple of weeks. I still have intestinal symptoms, but only about half as frequent/severe as they were before. I've been gluten-free for about 2 months now. I hope you are able to find the solution to your problems, and this is a great place to get support!

[Guest Nukapai]

Thanks, Catfish: I've noticed this is a wonderfully supportive and USEFUL board, I'm really glad I found it!

I've decided that after the blood tests (regardless of what they indicate) I will try gluten-free for a few weeks anyway, just to see what will happen. Can't hurt.

I really felt a lot more "normal" for the 3 days I was gluten-free - I know that sounds odd for such a short time, but I didn't experience gas, headaches or joint/tendon pain at all and because I've had those chronically for so long, the absence of them seemed really noticeable.

I will also save up to have a private food intolerance test done (it costs quite a lot more than I can afford right now, but I think it'll be worth saving for).

[tarnalberry]

nah... seeing improvement in 3 days is totallly believable. it varies for everyone, but I'd take it as a big sign! :-)

[Guest Nukapai]

nah... seeing improvement in 3 days is totallly believable. it varies for everyone, but I'd take it as a big sign! :-)

At this point, I would be so RELIEVED if it could be that simple ...

Fingers crossed for some kind of a solution.

Now I've just got to figure out what to take with me for lunch tomorrow, as I've got a 10 hour work day ahead of me. Probably nuts and rice cakes or something.

[tarnalberry]

lol... when I have nothing else around, it's usually rice cakes with peanut butter. very filling....

[celiac3270]

When my stomach gets really bad, the only thing that will calm it down for me is my heating pad and rocking back and forth.

It always settles it down after around 10 minutes.....

Karen

When I get the stomach pains, I find that there isn't all that much I can do, except wait it out. When they get really severe, I, like Karen, like to rock back and forth.......I also cope by lying on my bed hunched over..........

[GEF]

I lie on my stomach, it's the only thing that works for me and I lay there until I feel better.. I find that the less my abdomen muscles are used, the better I feel more quickly. GasX was my ultimate cure for the bad stomach pains... but, that's before I found out it contains gluten. Why can't they make a gluten-free GasX? Oh, also peppermint tea is soothing, can't say it gives immediate results, but it does make me burp.

Gretch

[crc0622]

Nukapai:

Sounds like all of your symptoms are pointing toward Celiac. As I have read on another Celiac forum, IBS means "I've Been Stumped" hahahaha

Lay off any processed foods for a while and you won't have to worry about those nasty little hidden ingredients like "gluten-free wheat." Sounds like science fiction, doesn't it? Well, according to many, it's fiction, not science.

There have been a lot of warnings about eating items marked gluten-free when traveling in Europe because they do recognize the wheat starch as being gluten-free, but it's really not and lots of people (including you, undoubtedly) have reactions to it.

Hang in there!

Celeste

[Guest Nukapai]

Thanks, Celeste.

I like that IBS quote ... so true!

I've got my blood test tomorrow. I've not been able to eat a lot of anything, much less risk gluten-foods (if that is indeed what has been making me so ill), so I hope a few days of a restricted diet isn't going to mess up the results. But that remains to be seen.

[GEF]

Good luck with the tests!!

[Guest Nukapai]

Ok, I have 9 more days to wait for the blood test results.

In the meantime, I have lost close to 10kg in weight in the last four weeks, my gums have started bleeding when I brush my teeth and my stomach is constantly in a variety of degrees of being swollen and sore.

Returned to work on Thursday, worked that day, Friday and yesterday - absolutely exhausting as I was unable to eat anything during the day. I had some plain salad with no dressing and a couple of rice cakes for dinner on Wednesday and Thursday evening, but the salad on Friday evening had some red bell pepper in it. That's the only thing I can think of that could have caused my severe burning stomach pain to return on Saturday - I was in cold sweats/feeling dizzy/seeing spots in front of my eyes because of the pain for most of Saturday and had to go to the stock room to crouch down for a few minutes at a time just so I could make it through the day. Couldn't have anything except water for the whole day and in the evening I *still* got awful diarrhea.

I am starting to get worried that at this rate I'll end up in hospital. I hate hospitals.

On a positive note, I had some mushroom soup (I checked the ingredients really carefully - definitely no gluten or nothing masking as gluten) and rice cakes for dinner last night and this morning most of the pain is gone. I can still hear all the gurgling noises, but I feel almost normal. See how the day pans out...

[celiac3270]

Karen,

I'm going to try the heating pad for stomach pain........my grandma had one for her back that didn't help her (she has scoliosis and the most severe osteoporosis the doctors have ever seen). Anyway, she has to come into the city for another doctor's appt....trying to find someone who can help her back....and she's bringing the pad since it doesn't help her so I could try it for my next stomach thing.

Gretchen,

I think I might try your suggestion of pepperment next time, as well.

Nukapai,

Good luck with your bloodwork and feel better.....that sounds terrible.

[judy04]

Hi Nukapi,

Your symptoms sound a lot like mine used to. Are you seeing a

gastoenterologist? If you are, I would insist on having a "scope"

which would examine your upper GI tract. I had severe acid

reflux disease which can be a symptom of celiac disease. I had the anxiety,

burning, palpitations, spots before my eyes, plus severe pain.

By treating these symptoms with medication and maintaining

a gluten-free diet my symptoms and the pain are gone. Hope this helps...

[Guest Nukapai]

Hi Nukapi,

Your symptoms sound a lot like mine used to. Are you seeing a

gastoenterologist? If you are, I would insist on having a "scope"

which would examine your upper GI tract. I had severe acid

reflux disease which can be a symptom of celiac disease. I had the anxiety,

burning, palpitations, spots before my eyes, plus severe pain.

By treating these symptoms with medication and maintaining

a gluten-free diet my symptoms and the pain are gone. Hope this helps...

I haven't been referred to a Gastro specialist yet. Currently I can't afford to go private, so I am in the hands of the UK National Health Service. Everything is buried in bureaucracy and waiting times are long. If I don't get anywhere on the NHS, I will use my modest savings to go private.

I've recently changed doctors - my original one had me down as an annoying hypochondriac or something because he would never examine me, never take me seriously and he just seemed to hate me for some reason.

Now things are at least moving in the right direction - my new doctor has started testing for celiac disease and the first stage was the blood tests that I just had done.

I've had a separate long-term medical issue of over-active mucus production in my sinuses leading to chronic catarrh (although who knows, this might all be interlinked to the gastro stuff) - and I am seeing an Ear/Nose/Throat specialist for that. Again, on the NHS, so waiting times are long. I've had blood tests and a CT scan for that and my next appointment (to discuss the results) is on the 25th of October...

[Guest Nukapai]

Blaaargh, bleeding when I go to the toilet now.

I'll call the doc tomorrow and ask for advice.