Sad And Angry

[Byte Me]

When I first went to see my Dr. about all the symptoms I've been having, never once did the phrase "irritable bowel syndrome" come out of his mouth - he immediately suspected celiac or chron's.

11 days ago, when I had my colonoscopy and egd, OF COURSE the first thing out of the GI's mouth is "oh, its probably ONLY IRRITABLE BOWEL SYNROME" !!!! Sure enough, I got my results, negative biopsies on everything, some inflamation and irritation in my colon, and a positive WBC count on fluid samples they took (what does that even mean?? the Dr. claims it is due to the inflamation/irritation?)... and I have significant damage from acid reflux. HUH?! I *never* get heartburn. Official diagnosis: IBS.

Anyway, he (the GI) wants me taking Prevacid and Nulev. The Nulev, I HATE. I still need to "go" frequently, but it's like I can't, and I hurt SO BAD in my intestines when I take it. As for Prevacid, I've heard that reducing so much of your stomach acid can actually lead to further problems? Anyone know about this? Suggestions, alternatives?

Really weird side effect of the colonoscopy/egd.. I can literally feel food moving through my gut now. And it moves FAST.

Another weird side effect I thought I would mention for others going through the process.. the Versed made me extremely horribly depressed for about 2 days after the procedure. (Don't get me wrong, this stuff is fantastic DURING the procedure.. I can remember gagging on the tube going down my throat, but not really caring, and I also remember hurting in my intestines during the procedure, but again, not scary at all, I was just annoyed, lol.) Knowing the depression was a side effect of the Versed (albeit not common) made it easier to deal with. I have the same reaction to Klonopin with extended use.

I never thought I would be so disappointed about testing negative for a disease. (Well, I AM glad it isn't Chron's, though!) I'm going gluten-free anyway...have already started actually, and (crossing fingers that this isn't just mind over matter) my symptoms seem to be improving. I'm sleeping better, the D is better, I don't look or feel as bloated. I think I'm mainly disappointed I don't have an official diagnosis because now I can't get my 3 kids ped. to test them. I worry about changing their diet and maybe doing damage to their health if it isn't necessary.

Oh, one very interesting P.S. - I was talking to the lady who runs the natural food department at the local Kroger's, and her son is gluten intolerant. Her theory on why so many people are all of a sudden turning up in droves with active celiac/gluten intolerance/wheat allergies - due to the fact that wheat is stored for up to TEN YEARS!? before it is even processed for production. sheesh. just think of all the accumulated mold/insects/rodent droppings. Makes sense to me.

thanks for listening to all my ranting and rambling.

~Jenn

[Fiddle-Faddle]

Oh, one very interesting P.S. - I was talking to the lady who runs the natural food department at the local Kroger's, and her son is gluten intolerant. Her theory on why so many people are all of a sudden turning up in droves with active celiac/gluten intolerance/wheat allergies - due to the fact that wheat is stored for up to TEN YEARS!? before it is even processed for production. sheesh. just think of all the accumulated mold/insects/rodent droppings. Makes sense to me.

~Jenn

HOLY CRAP. (literally!)

[Guest nini]

sorry you don't have an "official" dx, but good for you for trying the diet. As far as your kids are concerned, the gluten-free diet can be a very healthy diet when done right and your kids health would not be adversely affected by this diet... not unless you just fed them only gluten-free replacement foods like Kinnikinick donuts, bagels, breads, cookies, rolls and so on... if you stick with a diet of fresh fruits and vegetables, lean meats and other proteins like nuts, and potatoes for starch, salads, and gluten-free grains like rice, quinoa, teff, millet, buckwheat... then your whole family would be getting a balanced HEALTHY naturally gluten-free diet. Occassional treats of gluten-free substitute products are fine, but don't make them the staple of your diet.

My daughter's dx from the GI was IBS... but I went back to her ped. and insisted on trying the diet, after experiencing MIRACULOUS results from just 3 weeks on the gluten-free diet, her ped. said that at the very least she's gluten intolerant. Her official dx is gluten intolerance, but her ped said that "we know it's Celiac... we just can't prove it right now"... if I hadn't had an official dx for me though, I suppose it would have been harder to stick to my guns and commit to keeping my daughter gluten-free. But now when she gets "glutened" we can tell instantly and she's uncomfortable for days... so final verdict, no gluten for her ever... despite ignorant GI docs assertion that she "just has IBS and feed her more whole wheat" BLECH!

[eKatherine]

Oh, one very interesting P.S. - I was talking to the lady who runs the natural food department at the local Kroger's, and her son is gluten intolerant. Her theory on why so many people are all of a sudden turning up in droves with active celiac/gluten intolerance/wheat allergies - due to the fact that wheat is stored for up to TEN YEARS!? before it is even processed for production. sheesh. just think of all the accumulated mold/insects/rodent droppings. Makes sense to me.

I think it's the fact that we are eating more wheat products than ever that is pushing people over the edge. Two generations ago, people ate three meals a day, which included a mix of foods. In the past 20 years we have been bombarded with messages to eat more whole grains - in addition to all the grains we are currently eating - and 'fat-free' foods, which are all wheat products. These have displaced meat in meals, and have substituted for fruit and other healthier snacks.

[ravenwoodglass]

"11 days ago, when I had my colonoscopy and egd, OF COURSE the first thing out of the GI's mouth is "oh, its probably ONLY IRRITABLE BOWEL SYNROME" !!!! Sure enough, I got my results, negative biopsies on everything, some inflamation and irritation in my colon, and a positive WBC count on fluid samples they took (what does that even mean?? the Dr. claims it is due to the inflamation/irritation?)... and I have significant damage from acid reflux. HUH?! I *never* get heartburn. Official diagnosis: IBS.

"

You need to find another GI doctor or just go gluten free. IBS (I Be Stupid) does NOT cause noticeable inflamation and irritation. Also something is causing the acid reflux, most likely your response to gluten. I am glad to hear that you are going to continue the gluten free diet. Also ask a pharmacist to make absolutely certain that the meds that were prescribed are gluten free. You would be surprised how many tummy meds are not. Also IMHO the reaction you had after the procedure was most likely a gluten depression from something they used for the procedures. Versed would not cause a reactive depression but gluten sure would.

[rinne]

I would like to understand why the genetic testing is the last test they do when it along with diet would be a definitive diagnosis. Does anyone know?

I am glad that I have learned that they only give you the "gold star" diagnosis once the damage to the villi has reached the third on a scale of four in their destruction. It means that if they are not nearly destroyed you will heal quicker and perhaps don't have one of the diseases in the cascade can happen to Celiacs.

It appears to me they prefer to diagnose something they can medicate. Trust yourself not them.

P.S. I just went to the Nulev site and they say 1 in 6 Americans suffer from IBS, I wonder what America would look like if 1 in 6 were Celiacs.

[evie]

I think it's the fact that we are eating more wheat products than ever that is pushing people over the edge. Two generations ago, people ate three meals a day, which included a mix of foods. In the past 20 years we have been bombarded with messages to eat more whole grains - in addition to all the grains we are currently eating - and 'fat-free' foods, which are all wheat products. These have displaced meat in meals, and have substituted for fruit and other healthier snacks.

I agree!! If you are old enough you will remember when spaghetti first became popular in the US, then pizza & later sandwiches, especially subway sdw/ lots of bun. all based on bread/ wheat!! Long ago, like erly 1900's diets were based on potatos,when more moved to cities rice based, now wheat bread based!! no wonder there are more people/ celiac disease. good thinking "ekatherine" evie

[GlutenWrangler]

Why not just get an EnteroLab test done. It costs a lot but if you have celiac it will definitely show up. Also, there hasn't been much long term research into proton pump inhibitors like Prevacid. I read a study that was done on mice that showed long term use of PPI's causes bacterial overgrowth, which then causes gastritis. My doctor laughed when I spoke with him about this, but the research tells otherwise.

-Brian

[Fiddle-Faddle]

hasn't been much long term research into proton pump inhibitors like Prevacid. I read a study that was done on mice that showed long term use of PPI's causes bacterial overgrowth, which then causes gastritis. My doctor laughed when I spoke with him about this, but the research tells otherwise.

-Brian

Is there any long-term research on Zantac?

[loraleena]

First, sounds like you are gluten intolerant. Those tests being negative does not prove you don't have it. Stick to the diet, it may take a while and there may be setbacks, but good for you. My understanding of acid reflux is that in most cases it is a load of crap. And yes, I have heard that prevacid and others will make it worse in the long run. I have heard that most cases is really from not enough acid. I have read that taking a teaspoon of apple cider vinegar before meals will help. You might want to read more about this on the web. Good luck.

[Fiddle-Faddle]

I tried the vinegar thing--it made everything much worse. My reflux is not a load of crap, it's a load of acid that comes up and comes out my mouth and nose if I'm lying down! The Nexxium is helping enormously--but I don't want to be on it the rest of my life. I'm hoping I can wean off of it entirely--hopefull going gluten-free in January helps this (hasn't yet)....

[jerseyangel]

I tried the vinegar thing--it made everything much worse. My reflux is not a load of crap, it's a load of acid that comes up and comes out my mouth and nose if I'm lying down! The Nexxium is helping enormously--but I don't want to be on it the rest of my life. I'm hoping I can wean off of it entirely--hopefull going gluten-free in January helps this (hasn't yet)....

You are so right--when you have reflux, it's very real! Speaking from my experience, I developed reflux for the first time after being gluten-free for 5 months. This was also roughly the same time a lot of my additional sensitivites became a problem. I went on Prevacid, which helped, but I discontimued it after 3 weeks due to the side effects. Only after I identified my delayed food allergies and cut all of them out of my diet did my reflux stop. I've been reflux-free for a little over a month--it's quite a relief. No more belching, chest pain, tightness in my lower throat, acid taste, etc. For me, the foods that seemed to make the difference were legumes. I hope you get some relief soon, Fiddle Faddle!

[GlutenWrangler]

Fiddle-Faddle,

I'm not sure about any long term research on Zantac, but the article did say that because Zantac is not as strong as Nexium, Prevacid, Protonix etc....it is less likely to cause the same degree of bacterial overgrowth. It did say however, that people who use antacids like Zantac and Cimetidine (Tagamet) are twice as likely to develop bacterial overgrowth than those who do not use antacids. I thought that I had bacterial overgrowth after reading the article because I take Protonix. I managed to get an antibiotic from my GI doctor. Obviously it didn't do the trick, so now that I know it is celiac I don't really worry about it too much anymore.

[loraleena]

I am not saying that reflux doesn't exist, just overdiagnosed. If the apple cider makes it worse than that shows it is definitely not too little acid. Sorry to offend anyone.

[key]

I took ORange Peel extract for heartburn and I believe it helps. Also make sure you are 100% gluten free, including cross contamination and shampoos, cosmetics. This all helped me. Also Digestive enzymes are great.

Monica

[Melzo]

Someone on this site recommended digestive Enzymes for my heartburn / acid reflux problem. I must say, it works wonders!!! And it is all natural. I bought Papaya enzymes at GNC (gluten-free even). You can take 3 - 8 a day (they taste like candy) and they absolutely work. My sister and best friend who also had problems are now taking them. And it worked for them as well.

I am pregnant and the heartburn / acid reflux is a nice little side effect. I hope to get back to normal after my little Samantha is born! I feel really bad for all of you who deal with this on a daily basis. Hope everyone will get better!

[Guest BERNESES]

"IBS (I Be Stupid) does NOT cause noticeable inflamation and irritation. Also something is causing the acid reflux, most likely your response to gluten. I am glad to hear that you are going to continue the gluten free diet. Also ask a pharmacist to make absolutely certain that the meds that were prescribed are gluten free. You would be surprised how many tummy meds are not. Also IMHO the reaction you had after the procedure was most likely a gluten depression from something they used for the procedures. Versed would not cause a reactive depression but gluten sure would.

Jenn- I'm so sorry that your experience was so bad. If it makes you feel any better, I had almost the exact same experience as you. IBS was never mentioned as i was already gluten-free and improving. Then I did a gluten challenge for 10 days (not enough time to do any damage, but enough time to reverse all the progress I've made). I was told that the biopsy would be "academic" at this point. Woke up from the Versed incredibly depressed and freaked (lasted several days too) and was told I had no damage, therefore it was IBS. I said, "Well why have I been so sick during the last ten days?" His response was mind-over-matter, clicked on his heels and walked his cocky butt out. I was so upset from the Versed that I completely freaked.

I stayed gluten-free anyway and about one year later found a GI who actually listened to me and was willing to confirm it via genetic test rather than torture.

Just stay gluten-free. And make a dart board with your GI's pic on it. Mine's last name was Damianos, I now call him Demen.

[Guest Robbin]

Just stay gluten-free. And make a dart board with your GI's pic on it. Mine's last name was Damianos, I now call him Demen.

[Devsmom]

Anyway, he (the GI) wants me taking Prevacid and Nulev. The Nulev, I HATE. I still need to "go" frequently, but it's like I can't, and I hurt SO BAD in my intestines when I take it. As for Prevacid, I've heard that reducing so much of your stomach acid can actually lead to further problems? Anyone know about this? Suggestions, alternatives?

I am 100% for natural cures. Most main stream doctors are clueless, and drugs are bad for you- causing more problems.

My sons gastro dr put him on prilosec due to seen irratation fron endoscope, then told us he never had to come back unless he had a problem. How can a dr prescribe a drug to a kid (then14 ) and never have a followup appt???

I thought 'I'm not having him take this sh** forever. I did some reading on natural cures and I too read about the applecider vinegar.

Ds took 1 tbl of it , quit taking the prilosec and hasn't had a problem since. It was well worth the try and it worked for him.

I just know the drugs will cause more problems in the long run.

Good luck with all

Devsmom

[Byte Me]

Thanks to everyone for your responses (especially the dart board idea, thanks Berneses.. hehe). I'm feeling better about the whole thing now, except I wish I had just tried going gluten free in the first place - I wouldn't be stuck with all these medical bills!! The diet change has definitely made a big difference.

The apple cider vinegar thing seems like it is worth looking into for sure, I'm glad it was mentioned! I don't have symptoms of heartburn or reflux so I don't really want to take the Prevacid.. and I like vinegar . I'm still reacting to something though, not sure if its just my body adjusting, or maybe another sensitivity/allergy. I'm pretty positive I'm not accidentally getting 'glutened' because I've scrutinized to death the labels of everything going into my mouth, bought a new pot, skillet, bowl, plate and utensils just for me to use. I had a huge reaction to a store-brand ibuprofen which is supposedly gluten-free, and to a lesser extent when I take Estroven, which specifically says wheat and gluten-free on the label...this stuff has been great for those nasty night sweats I've been getting.. up until I did go gluten-free, that is. Now if I take it I'm headachey, bloated, tired, and just feel kinda stupid. I'm wondering if it could be the soy. Or maybe I'm just 'detoxing', who knows!

PS: anyone reading this who doubts that cross-contamination is very real, believe me, it IS.. I had my doubts, until I cooked a positively gluten-free dinner in what was previously the household "macaroni pot"... yeah, it is definitely real and not fun.

~Jenn

[Fiddle-Faddle]

Ibuprofen gives me diarrhea unless I take it with quite a bit of food, preferably yogurt. And twice this week, I thought I must be getting glutened by something--and both times, within 5-6 hours, someone else in the family had diarrhea, too, so I guess each time it was actually some kind of tummy bug. All the same, I'm getting tired of needing baby-wipes stationed at every toilet!

[lindalee]

Thanks to everyone for your responses (especially the dart board idea, thanks Berneses.. hehe). I'm feeling better about the whole thing now, except I wish I had just tried going gluten free in the first place - I wouldn't be stuck with all these medical bills!! The diet change has definitely made a big difference.

The apple cider vinegar thing seems like it is worth looking into for sure, I'm glad it was mentioned! I don't have symptoms of heartburn or reflux so I don't really want to take the Prevacid.. and I like vinegar . I'm still reacting to something though, not sure if its just my body adjusting, or maybe another sensitivity/allergy. I'm pretty positive I'm not accidentally getting 'glutened' because I've scrutinized to death the labels of everything going into my mouth, bought a new pot, skillet, bowl, plate and utensils just for me to use. I had a huge reaction to a store-brand ibuprofen which is supposedly gluten-free, and to a lesser extent when I take Estroven, which specifically says wheat and gluten-free on the label...this stuff has been great for those nasty night sweats I've been getting.. up until I did go gluten-free, that is. Now if I take it I'm headachey, bloated, tired, and just feel kinda stupid. I'm wondering if it could be the soy. Or maybe I'm just 'detoxing', who knows!

PS: anyone reading this who doubts that cross-contamination is very real, believe me, it IS.. I had my doubts, until I cooked a positively gluten-free dinner in what was previously the household "macaroni pot"... yeah, it is definitely real and not fun.

~Jenn

Get the unpasturized acvinegar. It is in the health food section of the grocery. It is called "the mother".

Ibuprofen gives me diarrhea unless I take it with quite a bit of food, preferably yogurt. And twice this week, I thought I must be getting glutened by something--and both times, within 5-6 hours, someone else in the family had diarrhea, too, so I guess each time it was actually some kind of tummy bug. All the same, I'm getting tired of needing baby-wipes stationed at every toilet!

I have been in the kitchen alot with this glutten problem now and one thing I try to do is make sure I rinse all every bit of the dishsoap off good cause it will cause D. And that is the last thing I need. LLee

[Tangerine]

Apple cider vinager note:

Be careful about the acid and your teeth. it can wear the enamel (sp) away... maybe try a straw or you can also get hydrochloric acid pill from 100mg up too about 650 mg. Just be careful how much mg you take a few minutes before a meal. I'd recommend finding the 100mg to 200mg capsules first and increasing from there. You could end up with more stomach pain if you go too fast! Plus HCL won't hurt your teeth . The thing with both HCL and ACV is that you have to make sure your stomach lining is healed or it could aggrivate it more(gastritis yikes!).

If you arn't feeling pain I'm pretty sure your stomach lining is ok.

[lindalee]

A teaspoon of the unpasturized is all you need-not much. If you put it in water the straw is a good idea. I usually put mine on my salad.