New To Diet Need Advice

[pufffee]

Hi,

I am very frustrated. I went to emergency room in January and with major cramps and Diarrhea. I have done, colonoscopy, endoscopy, and at least 4 rounds of bloodwork since then, no chrons, no UC or IBS. Finally just had a hydrogen breath test and no SIBO. I am also not lactose intolerant. I met with my third specialist and he says even though blood was negative, and I did biopsys for Celiac, it is not always going to show up. He told me they needed to take at least 6 samples to test from small intestine for definite confirmation. They did not and I was advise to finally do the gluten free diet. Oh ya, my mother has Celiac as well, so that is another reason they said my chances are high. I never did the diet because that is what I was paying the Dr.s to tell me what I had, prior to experimenting.

Sorry to ramble, I have been gluten free for almost a week. Diet is easier to follow with my mother being my coach. I am 29 but this was acutally the date my mother was diagnosed, even though she was born with it. I am still bloated and have Diarrhea(once a day, nothing like IBS, just when I go, it is never normal). I know nothing is fast, but, how long before I should start to feel better, if in fact I have a gluten intolerence?

[jststric]

I am not a diagnosed Celiac but I've read these boards for awhile now. I know the recuperation time is different for everyone. I've read that symptoms can show up as far as 15 days from the time an individual is "glutened". I have also read it can take weeks for some people to start feeling the differences in a gluten-free diet. Some are just a couple of weeks and others can be longer. I know that is so vague, and I'm sorry about that. It's just one of those things that can be very different depending on the individual. Best wishes!

[Wolicki]

Hi,

I am very frustrated. I went to emergency room in January and with major cramps and Diarrhea. I have done, colonoscopy, endoscopy, and at least 4 rounds of bloodwork since then, no chrons, no UC or IBS. Finally just had a hydrogen breath test and no SIBO. I am also not lactose intolerant. I met with my third specialist and he says even though blood was negative, and I did biopsys for Celiac, it is not always going to show up. He told me they needed to take at least 6 samples to test from small intestine for definite confirmation. They did not and I was advise to finally do the gluten free diet. Oh ya, my mother has Celiac as well, so that is another reason they said my chances are high. I never did the diet because that is what I was paying the Dr.s to tell me what I had, prior to experimenting.

Sorry to ramble, I have been gluten free for almost a week. Diet is easier to follow with my mother being my coach. I am 29 but this was acutally the date my mother was diagnosed, even though she was born with it. I am still bloated and have Diarrhea(once a day, nothing like IBS, just when I go, it is never normal). I know nothing is fast, but, how long before I should start to feel better, if in fact I have a gluten intolerence?

The time varies from person to person. If you havne't started probiotics and enzymes, that 's a good start. I found that eliminating ALL grains helped so much with the bloating. Grains and processed foods really made me look very pregnant Bloating is mostly gone now, except for a weak moment when I had a hot dog and now I am paying for it with a huge tummy Hang in there!

[pufffee]

The time varies from person to person. If you havne't started probiotics and enzymes, that 's a good start. I found that eliminating ALL grains helped so much with the bloating. Grains and processed foods really made me look very pregnant Bloating is mostly gone now, except for a weak moment when I had a hot dog and now I am paying for it with a huge tummy Hang in there!

Thanks for the reply, I was on probiotics(Align and yogurts) but stopped two weeks before my Hydrogren Breath Test becuase they said that can screw things up. So your saying I should start those up again, it can help? Also what grains did you stop if you can't have gluten? Rice and stuff? And lastly, what would trigger a hot dog to affect you? Is it made from Grain? Thanks, This site is great!!

[no-more-muffins]

Have you done any research on Microscopic Colitis? Some doctors don't even check for it. Its main symptom is diarrhea. Many people with MC have intolerances to dairy and soy as well as gluten. You might consider doing some research on MC and perhaps doing some food intolerance testing at www.enterolab.com. I think about 4% of celiacs have mc and there are many people without celiac who have it.

And if gluten is the only culprit it can take months or even a year to have your symptoms go away 100%. I am 3 months into the diet and while I feel better than I did when I started I still am not where I'd like to be. It does get better but the progress is slow.

[T.H.]

Agreeing with some of the previous posters - can be days or weeks before you notice an effect, depending on your body. Also, for an adult with celiac, it will be about 2 years before you are completely healed, according to my GI.

This is also what my doc has told me:

- did they do a colonoscopy to check for Crohn's or the pill cam that goes through all your gut? I tested negative for Crohn's with the colonoscopy, but my doc did the pillcam as well and it saw damage that is consistent with Crohn's only in the middle section of the gut. Might see if they can check for that.

- Celiac patients are very likely to have other food intolerances, allergies, and so on. I have never had a diagnosed food allergy before the celiac disease, but the doc tested me for them, and I'm allergic to TONS of stuff. He was telling me that if you ARE reacting to a food that is an allergen or an intolerant food for you, you will NOT heal from the damage from gluten very well. Eating foods with few ingredients and keeping a food log may be very helpful - and I'd keep track of everything that you notice different about your body: mood, pain, itching, whatever. One of my reactions to a food was, get this...pain in my left ear. That's it. We even did blind tests, and every time, if that food was present, so was ear pain. Weird as heck. :-P

- very important to research gluten sources if you haven't already. All sorts of crap you'd just NEVER think of. Some examples that surprised me: tea bags are often sealed with gluten, envelopes you lick to close use gluten in the glue, natural or artificial flavors and caramel coloring may be gluten based, some foods don't ever list gluten ingredients, but they may flour their molds with gluten for the product (hershey's kisses and many corn tortillas fall into this category). Just...it's crazy how much it's in, eh?

- I second the m. colitis testing - tested me for that, too.

- also, doc said that celiac folk tend to be more sensitive to dyes, additives, and preservatives in foods, as well as genetically modified foods. Not necessarily allergic to them, but they might make you react more to OTHER foods in your diet.

And...phew, I think I'd better shut up now, eh? Good luck to you!

Hi,

I am very frustrated. I went to emergency room in January and with major cramps and Diarrhea. I have done, colonoscopy, endoscopy, and at least 4 rounds of bloodwork since then, no chrons, no UC or IBS. Finally just had a hydrogen breath test and no SIBO. I am also not lactose intolerant. I met with my third specialist and he says even though blood was negative, and I did biopsys for Celiac, it is not always going to show up. He told me they needed to take at least 6 samples to test from small intestine for definite confirmation. They did not and I was advise to finally do the gluten free diet. Oh ya, my mother has Celiac as well, so that is another reason they said my chances are high. I never did the diet because that is what I was paying the Dr.s to tell me what I had, prior to experimenting.

Sorry to ramble, I have been gluten free for almost a week. Diet is easier to follow with my mother being my coach. I am 29 but this was acutally the date my mother was diagnosed, even though she was born with it. I am still bloated and have Diarrhea(once a day, nothing like IBS, just when I go, it is never normal). I know nothing is fast, but, how long before I should start to feel better, if in fact I have a gluten intolerence?

[Wolicki]

Thanks for the reply, I was on probiotics(Align and yogurts) but stopped two weeks before my Hydrogren Breath Test becuase they said that can screw things up. So your saying I should start those up again, it can help? Also what grains did you stop if you can't have gluten? Rice and stuff? And lastly, what would trigger a hot dog to affect you? Is it made from Grain? Thanks, This site is great!!

I have found the probiotics to be very helpful. Makes things more regular, and fewer digestive issues. I think it will

help.

When I first started, I was eating white and brown rice, quinoa, amaranth and some gluten free pastas (corn, rice) and bread. I looked like I was 7 months pregnant all the time and had terrible gas pains and/or flatulence. And, I could hear a "roaring" in my tummy whenever I ate them. It took a few weeks (by keeping a food diary) what was bothering me. I wrote down everything I ate and any reactions. My diet recently has been fruits, veg, lean protein, almonds and that's about it. No dairy, no nut butters, no grains. The bloating was finally gone, until that evil hot dog The label did not indicate any gluten. It could have been cc, but my guess is that it had too much junk in it. I tend to have issues with anything processed-so no more for me for a long time.

Isn't this a great place? Feels like my second home!

[pufffee]

Agreeing with some of the previous posters - can be days or weeks before you notice an effect, depending on your body. Also, for an adult with celiac, it will be about 2 years before you are completely healed, according to my GI.

This is also what my doc has told me:

- did they do a colonoscopy to check for Crohn's or the pill cam that goes through all your gut? I tested negative for Crohn's with the colonoscopy, but my doc did the pillcam as well and it saw damage that is consistent with Crohn's only in the middle section of the gut. Might see if they can check for that.

- Celiac patients are very likely to have other food intolerances, allergies, and so on. I have never had a diagnosed food allergy before the celiac disease, but the doc tested me for them, and I'm allergic to TONS of stuff. He was telling me that if you ARE reacting to a food that is an allergen or an intolerant food for you, you will NOT heal from the damage from gluten very well. Eating foods with few ingredients and keeping a food log may be very helpful - and I'd keep track of everything that you notice different about your body: mood, pain, itching, whatever. One of my reactions to a food was, get this...pain in my left ear. That's it. We even did blind tests, and every time, if that food was present, so was ear pain. Weird as heck. :-P

- very important to research gluten sources if you haven't already. All sorts of crap you'd just NEVER think of. Some examples that surprised me: tea bags are often sealed with gluten, envelopes you lick to close use gluten in the glue, natural or artificial flavors and caramel coloring may be gluten based, some foods don't ever list gluten ingredients, but they may flour their molds with gluten for the product (hershey's kisses and many corn tortillas fall into this category). Just...it's crazy how much it's in, eh?

- I second the m. colitis testing - tested me for that, too.

- also, doc said that celiac folk tend to be more sensitive to dyes, additives, and preservatives in foods, as well as genetically modified foods. Not necessarily allergic to them, but they might make you react more to OTHER foods in your diet.

And...phew, I think I'd better shut up now, eh? Good luck to you!

Hi TI,

You are just like me very detailed : ) Let me give you a tad more detail. I had colonoscopy and Endoscopy. What was found was E-GD in February included inspection and biopsy of the upper small bowel (duodenum) and no signs results indicated Celiac. Mild gastritis, and mild accute Colitis, and GERD. I then had more blood work to rule out Chrons, UC, and Lactose intolrences. All negative. Not only did they not see damage from Chrons but the blood triggers that are usually positive were negagtive. I did malabsorbtion tests as well for things like B vitamin etc. and all were fine.

I was under the assumption they need to take upwards of 6 biopsy's of small intestine to actually get better idea of Celiac? Oh well

With all that has been done, my only issue is Diarrhea and bloating. My stomach will gurgle and make noises, mainly in the morning and coffee may or may not have anything to do with it, since mainly it has already begun prior to drinking coffee.

I was on Aciphex for my GERD. I was told GERD is heartburn. I have never in my entire life had heatburn. All that ever happens is gurgling and bloating. But I have GERD?? Aciphex gave me migraines and was stopped? I am wondering even though I do not have heartburn, would going back on GERD med help me? OF course along with Gluten free diet? I will also check out M. Colitis.

Look forward to your thoughts, sorry for rambling. I have been very frustrated over last 9months and full of info lol

[pufffee]

Have you done any research on Microscopic Colitis? Some doctors don't even check for it. Its main symptom is diarrhea. Many people with MC have intolerances to dairy and soy as well as gluten. You might consider doing some research on MC and perhaps doing some food intolerance testing at www.enterolab.com. I think about 4% of celiacs have mc and there are many people without celiac who have it.

And if gluten is the only culprit it can take months or even a year to have your symptoms go away 100%. I am 3 months into the diet and while I feel better than I did when I started I still am not where I'd like to be. It does get better but the progress is slow.

Hi No More,

Thank you for info, I will check with my doc about MC. Since I have done so much testing maybe he will know if that could be issue. See my large reply I made today to another user and let me know your thoughts. This site is so helpful1!

[ranger]

My symptoms ( mostly D and gas and gurgling) Cleared up 75% right away, but, now 8 months on the gluten-free diet, not much has changed. It's a whole lot better, though. I'm thinking of adding probiotics to see if that helps. It is a long, slow process for some. Hang in there!

Susan