Maybe The Diet Just Isn't Working For Me.....

[mythreesuns]

This has been a long journey for me (though admitedly not that long compared to some of you) and I thought I was finally at the end of it. I thought I had finally figured out what was making me sick, but maybe I was wrong? Maybe it's not a gluten intolerence...or am I giving up too soon?

When I first went milk-free I had such success...for about a month. Then it all came back IN SPADES. That, combined with the discovery of my arthritis, prompted me to go gluten-free as well as milk-free.

Well, it's only been about 3 weeks, but I'm not sure I see significant improvement in my symptoms. I've had a sum total of 2 "normal" BMs, and 3 days of feeling "good." Admittedly, I could have glutened myself twice over those 3 weeks (cross-contamination), and it did take me over a week to realize that chewing gum had gluten in it.

I'm not expecting miracles, but I was hoping for SOMEthing positive. Something to indicate that yes, I'd finally found my answer. But as I sit here in front of the computer, bloated and feeling like I'm 5 months preggo, recovering from Friday's D-fest, more tired than I've ever been...I wonder if I still need to go looking for answers.

[Fiddle-Faddle]

Hi, Toni, wish I could help. But it looks like you're actually helping me--I didn't know chewing gum had gluten!!!

Give it a bit more time, and and for now, you might want to avoid gluten-free substitutes, and just eat foods that are easy on your tummy--rice, plain meats, bananas, etc. If you are eating gluten-free breads, snacks, treats, etc, that might be a bit more than your tummy can handle yet. maybe try the bananas, rice, meat, and clear liquid diet for just a few days, and then gradually add one new "real "food every 2 days? Right now, your tum might be hypersensitive, but it may very well settle down if you are kind to it--and then you can work your way up to the really good gluten-free stuff, and then you won't feel deprived....

[mythreesuns]

I didn't know chewing gum had gluten!!!

I read somewhere that they use wheat starch to keep it fresh. Ever notice how a piece of gum out of the package is powdery?

[psawyer]

"I read somewhere" is pretty vague.

Do you know details of what brand in particular of chewing gum is NOT gluten-free? The Canadian Celiac Association guide lists chewing gum as safe. The powder on the gum in the package is typically sugar, not flour.

[queenofhearts]

Most chewing gum is safe, though there are some exceptions. Wrigley's is safe. But some folks do have bad reactions to sugarless gum, so consider that...

Leah

I really think you need to give the diet more time, Toni. Especially if you have been ill for a while, it takes time to recover. I've been gluten-free since late May & I'm just now beginning to feel real changes...

[mythreesuns]

"I read somewhere" is pretty vague.

Sorry, I wasn't trying to be vague. I read it in an online article. I think I saved it on my work computer so I'll have to look for it on Monday.

[Guest nini]

3 weeks is not nearly enough time to see any improvement, especially if you've been accidentally glutened during that time. Every incidence of accidental glutening sets your recovery time back that much further. You need to give it a minimum of six months before you decide if it's not helping you, but keep in mind that AVERAGE healing time for most celiacs is actually TWO YEARS. And that is only if you are 100% strict with your diet and no accidental glutenings during that time. In the beginning most of us are also lactose intolerant because when the villi are damaged there is no surface area to digest lactose. So the advice I was given was to avoid lactose for the first 6 months until my system could handle it better. Some of us can never tolerate dairy again, but some of us can after the villi begin to heal, you'll have to figure that one out for yourself.

Now, if you noticed ANY improvement at all when you went gluten-free, even a small improvement, that is significant, and the fact that you've had reactions from cross contamination shows you are sensitive to it. So, I would say, give it more time. You haven't given it enough time to make a fair assessement. You may also have other food intolerances as well that are impeding your progress. Many of us do. Mine are antibiotics and hormones in meats, nitrites and nitrates, and possibly soy... some people are intolerant to all grains including rice, some can't tolerate corn or tomatoes, some can't tolerate certain fruits or nuts... you are just going to have to try and figure out for yourself what makes your symptoms worse, and the best way to do this is by keeping a food journal and by doing an elimination diet and then slowly adding things back into your diet one at a time. There are no medical tests that I'm aware of that can defiinitively dx a food intolerance. If it's a true allergy they may be able to test for it, but not intolerances. That is something you have to figure out for yourself. Learn to trust your gut instincts (pun intended)

[marciab]

This diet is a learning process for most of us. I'm a little thick headed when it comes to what I can or can't eat. I had to try wheat 3 times before I could convince myself it was a BAD IDEA !!! And for some reason I keep trying garlic and onions.

It is easy to get discouraged with all of this. I find that going back to my "safe foods" everytime my stomach gets upset is still necessary after 11 months. But that's ok right now.

At this point, I am just happy not to be having the horrible pains I was having 3 years ago. I could only eat "safe foods" when I started this diet.

Are you keeping a food dairy ? It really helped me to figure out just what was messing up my stomach.

Hang in there

[mythreesuns]

Now, if you noticed ANY improvement at all when you went gluten-free, even a small improvement, that is significant, and the fact that you've had reactions from cross contamination shows you are sensitive to it. So, I would say, give it more time.

Thanks so much for the perspective. I'm just so sick and tired of being sick and tired! I do believe I'm intolerant to milk, and I haven't had any of that since about a month BEFORE I went gluten-free.

Sigh...nose back to the grindstone!

Hang in there

Thanks, that's just what I needed to hear!

[oceangirl]

Thanks so much for the perspective. I'm just so sick and tired of being sick and tired! I do believe I'm intolerant to milk, and I haven't had any of that since about a month BEFORE I went gluten-free.

Sigh...nose back to the grindstone!

Thanks, that's just what I needed to hear!

Toni,

I am 5 months into mostly gluten-free. ( A few things I missed at first.) I am still struggling with other intolerances. I do think maybe my body doesn't make certain enzymes to digest food because I seem highly sensitive to many things. Right now I am gluten, dairy, corn and soy-free. A food log helps a lot although it doesn't always give you the answers either. I think what it does for me is give a "range of suspicious things". After feeling a lot better for 2 weeks I am having a major setback right now which could be either caused or not helped by having to take two rounds of antibiotics for a bronchial infection. It is daunting, but when I go back and read my list of original symptoms I have to remember how far I've come- many are gone. But I do wish I could not think about or be aware of my intestinal track for awhile! Please hang in there and keep referring to this board- it really helps!

lisa

[rinne]

Welcome, I won't repeat the many helpful comments people have made, only that I have found all of what they have said to be helpful.

It took me weeks to get to the point of feeling confident that I was not accidentally glutening myself, dairy was the next thing to go and now I am avoiding soy, corn and grains in general although I will have a little in home made treats. I find the simplest diet works for me and often I will eat only one food at a time. I eat fruit early in the day, often watermelon or mango for breakfast, protein at lunch, starches at dinner although really I eat small meals through out the day. Saturday I couldn't resist the grapes in the evening and paid for it with indigestion.

I have been seeing an acupuncterist since January and feel that it is helping also. He says my digestion is very weak and that he is working on strengthening it. In January when I first sought help I was over the top as far as discomfort and pain, fortunately I found Dr.Y and needles and then through a friend a gastro who said "celiac" and this led me here. This is a great place to find support.

I know it is difficult, I am impatient to be well again but I realize it has taken a long time for me to get this sick and it is going to take time to heal. I was going to add "hang in there" but I think I'll change that to "hang in here". In the midst of our misery we often find ways to laugh together and that really helps.

[mythreesuns]

I am still struggling with other intolerances.

Thanks, I'm wondering if this might be the problem with me as well. As soon as I can get some money together (DH is holding out for a FT job) I'm going to go through EnteroLab to get tested for the full range of intolerances.

I find the simplest diet works for me and often I will eat only one food at a time.

I was going to say "hand in there" but I think I'll change that to "hang in here". In the midst of our misery we often find ways to laugh together and that really helps.

Thanks for both pieces of advice. I think a previous poster may have been correct in noting that going "ging-ho" with gluten-free alternatives may have "shocked" my system, and maybe its best for me to eat simple, whole, fresh foods for a while. Heck, it couldn't make me feel worse, eh? LOL

Trust me, I will be sticking around here! You guys have ALL been fabulous, and a tremendous resource in the midst of a world that just doesn't relate. My mom was joking (but I didn't think it was funny) when she said, "Are you a hypochondriac?" when I was relating all the things I have been going through that could be related to a gluten intolerance. So much for understanding...

[rinne]

Toni, I hear you.

My Mom, who has been sick for at least thirty years and is currently diagnosed with fibromyalgia, arthritis, diverticulosis, fibroid breast disease, very low blood pressure and probably others I can't think of but tells me she doesn't have Celiac said to me well I don't think you're that sick. I have melted, I am ill and the fact is my mother is happy that I am thin and because she herself is unwilling to change she would have me stay in ignorance about my illness. It just makes me very sad.

Celiac changes everything. Maybe we could have a rendition to Cindy Lauper's Money Do you know the song?

[mythreesuns]

Celiac changes everything. Maybe we could have a rendition to Cindy Lauper's Money Do you know the song?

No, I don't know the song, but I like the idea of writing a celiac song! LOL

[ravenwoodglass]

Hi Toni, You've gotten some great responses that don't leave me a lot to add other than encouragment. It took a long time for most of us to get as sick as we have gotten and it can seem like it takes forever to heal. You have seen some progress and you can expect to see more. Hang in there and hopefully things will improve more noticeably soon.

[jknnej]

Actually, most gum IS gluten free. Of course you always have to check but I know for a fact that Bubblicious, Trident Sugarfree, and Orbit Sugarfree are all gluten-free.

[AndreaB]

Thanks, I'm wondering if this might be the problem with me as well. As soon as I can get some money together (DH is holding out for a FT job) I'm going to go through EnteroLab to get tested for the full range of intolerances.

I had my family (except infant) tested for all the intolerances that enterolab tests for. The info is in our sig. Anything posted was above the normal range. I probably wouldn't have known for awhile if I hadn't been pursueing my baby's eczema. Allergy testing and eliminating most of those foods helped but didn't clear him up. Once I went totally gluten free he was free of eczema.

I agree with what everyone else has said also.

[mythreesuns]

Actually, most gum IS gluten free. Of course you always have to check but I know for a fact that Bubblicious, Trident Sugarfree, and Orbit Sugarfree are all gluten-free.

Oh, halle-freakin-luja!!!!! lol

I guess you can't always believe what you read, huh?