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

[IrishHeart]

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.

Mommida raises many excellent points and EE symptoms can be caused by use of tetracycline, too, I believe?? (a friend of mine had this and she had trouble swallowing food)...ask the GI if he checked you for this! (the stool testing can also check for parasites and h. Pylori--I believe) Good luck--keep pressing for an answer!

[Manonfire]

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.

Thanks !.

My doctor doesn't have a clue what's going on. In fact I had to pay to see a private doctor and he was shocked I hadn't been referred. My GP's has over six thousand patients and seem to rush you in and out with every appointment so when I go in I always end up forgetting to mention something since everything is so complicated at the minute.

I've been thinking a hernia , candida , celiac , acid reflux or maybe a combination of them all.

It's frustrating to say the least but hopefully soon I'll be able to get this under control.

Thanks again for all the help you've given me.

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.

I'll have a look into that and the other possibilites you've mentioned.

I've been keeping a food diary as from yesterday but to be honest it seems now I'm in constant pain , falling asleep and waking up with it even if I eat barely anything which is strange.

Thanks.

One more thing maybe worth mentioing is that my oven broke a while ago and since then I've been using a george foreman grill to cook my chicken on. It tends to cook quite hard and if I get it out earlier it doesn't look cooked to me. I'll have to get an oven soon. This is getting expensive , I'm having to redesign the kitchen and stock it with expensive food lol !.

[mommida]

Try and have some frozen things to soothe the burning in your chest for the "GERD". Popscicles, Slurpees, fruit sorbets (look for fuits types that can bring down inflammation), and some people suggest frozen banana (I would be careful not to choke on frozen fruit).

[jcmi10236]

I have a question for mushroom. If I have been avoiding gluten, will a colonososcopy still show celiac etc?

I actually have Constipation, nausia, horrible back and tummy pain. Is that normal for the back to hurt?

Its so hard to figure out what to eat because almost everything has gluten or soy. I stuck to the meat and cooked vegi/sweet pot diet and water for a couple weeks and actually had relief briefly. I obviously added something that has me a mess. Going to go back to the plain diet. I get a little rebelious and want something enjoyable and ya know . . . just something a simple as adding spices. Plain chicken gets old and I cant hardly tollerate fish much more.

Interesting to hear that IC and muscle weakness go along with gluten issues I have never heard that. One of my previous theories is that the bowel pushing on the bladder(inflamation) might be increasing the bladder pain.

[kareng]

I have a question for mushroom. If I have been avoiding gluten, will a colonososcopy still show celiac etc?

I actually have Constipation, nausia, horrible back and tummy pain. Is that normal for the back to hurt?

Its so hard to figure out what to eat because almost everything has gluten or soy. I stuck to the meat and cooked vegi/sweet pot diet and water for a couple weeks and actually had relief briefly. I obviously added something that has me a mess. Going to go back to the plain diet. I get a little rebelious and want something enjoyable and ya know . . . just something a simple as adding spices. Plain chicken gets old and I cant hardly tollerate fish much more.

Interesting to hear that IC and muscle weakness go along with gluten issues I have never heard that. One of my previous theories is that the bowel pushing on the bladder(inflamation) might be increasing the bladder pain.

I'm not Shroomie but -

First - A colonoscopy will not show Celiac ever. You need an endoscopy. A colonoscopy is for the large intestine. You need the endo for the small intestine. A Doc might want to do both to rule out any other issues.

If you have been gluten free, The villa damage may have healed enough that it will be hard or impossible to get a biopsy during the endo that will show Celiac.

[Manonfire]

I have a question for mushroom. If I have been avoiding gluten, will a colonososcopy still show celiac etc?

I actually have Constipation, nausia, horrible back and tummy pain. Is that normal for the back to hurt?

Its so hard to figure out what to eat because almost everything has gluten or soy. I stuck to the meat and cooked vegi/sweet pot diet and water for a couple weeks and actually had relief briefly. I obviously added something that has me a mess. Going to go back to the plain diet. I get a little rebelious and want something enjoyable and ya know . . . just something a simple as adding spices. Plain chicken gets old and I cant hardly tollerate fish much more.

Interesting to hear that IC and muscle weakness go along with gluten issues I have never heard that. One of my previous theories is that the bowel pushing on the bladder(inflamation) might be increasing the bladder pain.

I get really constipated. I've not been for 5 days now and that's not unusual.

Have you ben checked for b12 defeicency ?. It's strange. I've had constipation since birth but when I last had my b12 jabs I went to the toilet 4 days in a row.

My mum has a gallstone and tends to get back pain , nasuea and stomach ache. Although she suffers with the complete opposite of constipation !. Still it might be worth looking into those things.

I'm not Shroomie but -

First - A colonoscopy will not show Celiac ever. You need an endoscopy. A colonoscopy is for the large intestine. You need the endo for the small intestine. A Doc might want to do both to rule out any other issues.

If you have been gluten free, The villa damage may have healed enough that it will be hard or impossible to get a biopsy during the endo that will show Celiac.

Annoyingly I can't even remember if I'd cut out wheat before the endoscopy I had but I'm sure I did. Kind of frustrating now that I look back on it because if I wouldn't have I might have had a diagnosis. All these changes I'm doing now are purely on me hoping ( as strange as that sounds ) I'm celiac.

I had a letter hand delivered by a taxi before from the hospital and found that really strange , before opening it I was kind of scared it was going to tell me something was badly wrong since I've still not had my results back for a colonic transit test for the constipation I get. It turns out it was just for a reminder for a follow up appointment.

I wonder why they sent it by taxi.

[Manonfire]

I've been taking a 20mg omeprazole ( antacid ) twice a day morning and night. A probiotic after every meal and for the mean time also a laxative early on in the day since I'm not going at all without them and it's causing me quite a bit of pain also.

I ate eggs this morning for the first time in a long time since I'm having to try different things after cutting out so much , 2 hours later and my lip has swelled up !. I don't know if it's just coincedence but I wouldn't be surprised if it's some type of allergy to those too !. Can I eat anything anymore ?!.

[Manonfire]

Wow. This is really depressing me now. Up again now with a burning stomach , feeling sick and everything else.

I've taken two 20mg omeprazole today and it seems they don't really help at all.

I'm on a gluten free diet and also avoiding everything else I think I'm allergic to and taking probiotics. There's nothing else I can do !.

I'm so frustrated with this.

My insides are tingling like crazy also.

I think I could have GERD because surely people with acid reflux don't have it daily do they ?. My doctor goes on as if it's nothing.

After going through everything with my prostate this is driving me insane.

[cap6]

This is just a thought...... I was on 2 omeprazole a day for almost 2 years. Someone on this board mentioned that they can work against you. I have been drinking 2.5oz of pure aloe (not the gel!) twice a day and have slowly been weaning myself of of the omeprazole. It's taken 2 months but I am now down to only 1/2 a pill a day. The health food store nutritionist said that it was safe to take up to 3oz three times a day. I have been suffering from C all my life and finally that seems to be a little better. Like I said.. just a thought.

[Manonfire]

This is just a thought...... I was on 2 omeprazole a day for almost 2 years. Someone on this board mentioned that they can work against you. I have been drinking 2.5oz of pure aloe (not the gel!) twice a day and have slowly been weaning myself of of the omeprazole. It's taken 2 months but I am now down to only 1/2 a pill a day. The health food store nutritionist said that it was safe to take up to 3oz three times a day. I have been suffering from C all my life and finally that seems to be a little better. Like I said.. just a thought.

Exactly what I've been thinking actually.

I'm almost positive I'm not celiac thinking about it. I've been researching and researching and researching to help myself and I honestly think all my symtpoms are somehow related to my stomach/bowel/intestine/colon area.

For starters as mentioned I've had constipation since birth and have always relied on laxatives. I was on antibiotics and pain medication for years with my prostate gland and in this time I was sat in almost every day with an average diet and still not opening my bowels regularly.

A year ago I suddenly find myself with B12 defeicency and then 6 months later B9 also. 6 months futher down the line I end up with acid reflux and my constipation becomes more severe and suddenly allergies and intolerances start popping up.

Something is causing this , bacterial overgrowth , candida overgrwoth or something similar I think. I'm playing with my diet at the moment and listing everything I eat. I've not had a pain free day yet but it's interesting to see how different I feel each night changing things like medication and the foods I eat.

One thing I will be sticking with for sure through out all of this though is probiotics and hopefully tomorrow I'll be able to pick up some digestive enzymes. There is an open clinic at my doctors tommorrow between 9am with two of the best doctors there so if I manage to get some sleep tonight ( fingers crossed ) I'm going to get myself booked in there and see what they think. If they disagree I'm going to be more firm and push them to believe me because something is wrong and if I leave my body like this it's just going to get worse I'm sure.

I'm also going to phone a dietitian now and hopefully try and get a nutritionist. At least I feel like I might be on to something now. Thanks for all the support and ideas everyone.

I wouldn't be getting on as I am now without this forum.

[Manonfire]

So two days ago I received a letter telling my my gastroenterologist appointment has been delayed until December. Even after a week before I phoned hoping to get the appointment before the original date o September.

I went to my GP today who told me low stomach acid can't cause acid reflux and that that isn't a possibility.

They gave me a stronger acid blocker which I'm not even considering because they make me feel worse and as much I try to tell them that they just wont listen.

I'm considering finding a private GP. I can't afford it but I've got no option now. I mentioned on here I think that I was low in B12 again , well it turns out I can never even get fitted in to get my B12 jabs. I managed to get two jabs in 2 weeks when I should have had five.

In a perfect world I'd like them to test my stomach acid levels , do a stool test to check for anything type of bacterial overgrowth or candida and I really think I should have a colonoscopy just to get any other possibilites out of the way.

I think going private is the only thing I can do now. I'm eating nothing to trigger reflux symptoms off at all I'm drinking only water or occasionaly very watered down drinks which are never pineapple or orange anyway. I'm eating only salad , potatoes and chicken , and gluten free bread.

That's it.

They told me they'd write to get me a nutritionist but I can't see that happening because they told me a month before they'd write to get my gastro appointment forwarded and look how that's turned out.

Oh and I was also told I can't take digestive enzymes because they contain acids that will make acid reflux worse ?.

[T.H.]

So so sorry this has been so painful and difficult for you! Jeesh it would be nice if our bodies would not be so contrary and hard to figure out!

I really don't know if this will help, because it sounds like there could be so many issues it's just hard to tell what's really going on in your body. But, I guess I'll share a couple things from my family too, for consideration, I suppose.

- When my daughter reacts to gluten, her reaction continues on for a while. She'll get stomach pain every time she eats or drinks, for days after a reaction. And if she reacts before she's STOPPED reacting, it just gets worse and worse and worse. Inability to sleep is part of hers, sometimes because of the pain and sometimes it's just some kind of gluten related insomnia.

- My daughter has environmental allergies. We have only recently discovered that when she eats food that she's allergic to OR eats food that has pollen she's allergic to that hasn't been washed off, she will have a lot of gut issues. Lots of pain and inflammation, and the pollen seems to make the other reactions even worse. Washing every veggie and fruit with soap and water has helped this.

- Both my daughter and myself are what is known as an 'oat sensitive' celiac - about 10-15% of celiacs are. We react to gluten-free oats just like wheat, rye, or barley. Many gluten-free companies - like some of those that make gluten-free bread - do not try to avoid cross-contamination from gluten-free oats, so will make oat sensitive celiacs ill.

- I have a friend who tested negative for celiac disease but, like yourself at first, had some severe gut issues and also thought that perhaps she was gluten intolerant or a false negative. She went on the gluten-free diet, with no improvement at all. After more research on gluten cc and talking with me about what we did, she tried it again, avoiding gluten AND gluten contamination. All her symptoms resolved.

I'm not saying this IS what your problem is, but I just note it because for my friend, she really didn't notice ANY difference until she got rid of all the gluten completely. It wasn't a case of less gluten=less symptoms. It was really more a case of her symptoms existing unless she eliminated the gluten cc as well as the gluten.

- Also, my daughter and I are super sensitive celiacs. When I went gluten-free, I felt worse than when I HAD gluten. I started losing weight like crazy, I was nauseous, headachy, shaky, an insomniac. Anxiety attacks and depression. It was really, really bad. I turned out to 1) have food allergies that I had NEVER reacted this way to. Some were testable, some I only found through a food journal. and 2) I am so sensitive to gluten, I can't go by labels. I have to call up companies and farms and check with them. I have to find out if, say, the salt I'm buying was processed in a facility that processed spice mixtures with gluten. I have to find out if, as another example, the strawberries I'm eating were covered with gluten contaminated straw to protect them from the sun. Or if the poultry I'm buying was FED gluten, because the contents of the bowels usually get on the poultry's skin during the defeathering process and get a little gluten on it. (well, and I turned out to be allergic to chicken. Who knew that was something you could be allergic to? 0.o)

...and yes, both my salt and strawberries have made me sick. And my oils, which were processed with wheat germ oil. And my sweet potatoes that had a wax coating, and the ones with a rye cover crop. And mushrooms (which also tend to get straw covering). And citrus with wax coatings and...literally, pretty much everything made me sick.

I couldn't get well for quite a while, because the doctors couldn't figure out why I was sick, it didn't seem to make sense because I was miserable every stupid day, and I couldn't figure out why I would feel better or worse. And I couldn't sleep, and I was depressed and anxious and son on.

I now can only eat foods from farms that I've spoken to and ensured are as gluten-free as I can get them. I eat veggies and fruits from farmers markets that I have to wash with soap and water anyway, because the people touching the food often have gluten on their hands. I have one grain that's still a little iffy, one oil, and one salt that I use.

If I do this - I'm good. If I don't, I start getting sicker and sicker and sicker.

Again...I don't know that this applies in your situation at all - you have so many other variables that could be affecting you. I think I just wanted to mention my own case, because it's so odd that I never would have thought I was reacting to gluten if someone ELSE hadn't mentioned the idea of a super sensitive celiac to me before, you know?

Very much hope that you can find a doctor who can help you with this soon!