Tired Of Waiting

[insomyr]

This is my first post here so forgive me if this topic is a repeat, as I'm nearly certain that it will be.

I was diagnosed with Celiac disease about 3 months ago after initially being told that I had intestinal lymphoma. Fortunately it's not lymphoma but I'm not thrilled about having Celiac either.

At any rate, I have made my best effort to adhere to the diet 100 percent since day one and have made only a few mistakes (Thanksgiving, etc).

Following my initial diagnosis back in October, I had a follow-up endoscopy 7 weeks later to check the progress and the biopsy results were identical - showing absolutely no improvement from the initial biopsy (and the blood panel, whereas 7.0 or lower is normal and above 7 is positive for Celiac, I was at 29.2).

Furthermore, my bathroom trips are no less frequent and no less unpleasant than they were a few months ago and, to some degree, on some days, it seems to be worse.

I don't get as noticeably sick as I used to after a meal but it seems like the other physiological results remain the same. I've now cut out dairy to determine whether or not it's a lactose intolerance as well but that doesn't seem to be making much of a difference.

Another thing that hasn't improved which I've been told should have improved 2-3 weeks after starting the diet is my energy. I still have none.

I suppose that I'm just curious as to whether or not anyone else has had a similar experience. My doctor thinks that either (A) my body is not responding to the diet or ( B ) I also have Crohn's disease (colonoscopy upcoming on 01-21 ... HOORAY!).

I'm 28 and I'm already tired of this.

Any information would be helpful (as long as you don't say, "Check what you're eating to make sure that it's gluten free," because I've done that already... EXTENSIVELY.)

Thanks in advance.

[carriecraig]

Welcome to the board - you will find a lot of great resources here. This varies from person to person, and it may take up to 2 years to feel good again, so you are at the beginning stages. I'm not sure why your doctor did another scope after just 7 weeks - that is way to early. They should be done about every 6 months, and you will start to see results.

Ping us anytime you need anything, there are a lot of great people who are always will to help, or lend an ear.

[gabby]

Could take 6 months to a year for your intestines to heal...but that can only happen once you've completely eliminated gluten from your diet. By the sound of things in your situation, it looks like you could be still getting glutened on a regular basis. This gluten-free lifestyle takes great discipline, especially in the first several months when you will learn all about food additives, flavoring, coloring, etc, etc. You'll also have to be very wary about cross-contamination which is a HUGE source of accidental gluten intake (eg eating steamed veggies at a restaurant that were cooked in the same water that they cook pasta in, breadcrumbs from the toaster, breadcrumbs from the 'family' butter, etc).

Have a good read on all the boards here and you'll find tons and tons of information, stories, advice, and tips. And what you can't find....just ask!

Strange things you maybe didn't know contain gluten:

-most potato chips (except for a few brands)

-pre-basted turkeys

-pre-roasted nuts (they're usually covered in a fine wheat-flour coating to prevent them from sticking together)

-some toothpastes

-flavored coffee

-many processed deli meats

Be patient. It'll take time to sort this out. It'll take time to feel better. It took me 18 months to really start feeling better...but I'm still only about 75% of the way there.

[happygirl]

insomyr-

welcome to the board! there are many people who are not necessarily lactose intolerant, but until their bodies have healed, they have trouble with dairy. Once they are 100% gluten-free and their intestines have fully repaired themselves, many have no problems with dairy. Personally, if I have accidental gluten, then I can't eat dairy for a couple days.

It took me a few months to feel back to 'normal' after starting the gluten free diet. But l found there were many places that I was still getting gluten in. Often, people list what they eat and others have provided insight into hidden sources of gluten. I only get symptoms if I have accidental gluten, otherwise I am great.

about what your dr. said about 2-3 weeks for more energy....it'll take me 2-3 weeks to get my energy back to normal if I eat something that was cross-contaminated with gluten. So, I would say you are going to need more than a few months to completely heal, get re-nourished, and get your energy up.

Hope that whatever it is, you find some answers and that you feel better!

[insomyr]

I appreciate the feedback. Maybe I am still coming into contact somehow. I've completely eliminated restaurants so that's not it but I hadn't heard about the toothpaste so I'll take a look. As far as everything else goes, I've dedicated myself entirely to getting better so I've only been eating things that are specifically labeled "Gluten Free" with a couple of exceptions which I have researched on the net to determine that they are as well.

Diet staples:

Corn Tortillas (La Banderita) + Hillshire Farms Deli Select Smoked or Oven Roasted Turkey (I eliminated the cream cheese because I kept getting sick)

Planters Honey Roasted Peanuts

Garden of Eatin Pico De Gallo chips

Mi Del gluten-free Choc Chip/Pecan Sandies cookies

Eggs and bacon for breakfast (Hormel or Jewel brand)

Diet Coke, water, A&W Diet Cream Soda, Diet Sierra Mist, A&W Diet Root Beer

Bananas, Apples, Oranges

Colgate regular toothpaste

That's the list of stuff that I would say that I ingest almost daily. If anything there stands out to anyone, I'd love to know. Otherwise I'll just try to be a bit more patient and let the healing process continue.

Thanks again for the input.

[happygirl]

nothing on there stands out to me, but I don't eat some of those products/brands regularly, so I wouldn't say that I'm an expert on them. Good job!!!

My guess is that you are still healing, and either temporarily lactose intolerant bc of the damage, lactose intolerant, you might have some other intolerances, or there is something else going on. I would be frustrated too!!!

7 weeks in between biopsies is a pretty short time, especially if you had some accidental glutenings.

Are you feeling any better, at all?

Maybe someone on here has some better ideas. Also, please let us know the results of your colonoscopy.

[hez]

I really do not understand why your gi doc did another scope so soon. It takes a long time to heal. Even if you had been completely gluten-free with no mistakes I am not sure you would have seen a difference. However, I am not a doc so I should not second guess! I do know what my personal experience has been. I was dx in April and started feeling better in September! That is when the trips to the bathroom started to decrease, stools started looking normal and energy started to return. Really did not start feeling like my old self until November. For me it has taken a long time. Hang in there and keep reading the boards.

Hez

PS-I thought the nut thing (flour to keep from sticking) was a celiac urban myth?

[Claire]

My own experience tells me that healing takes a long time; that food intolerances that you may not have been aware of hinder the healing process. Generally speaking, I think the info put out on intestinal healing is way way optimistic and healing depends on the individual, on contributing factors known and unknown.

Being sick is no fun at all and when one is trying hard to deal with the gluten-free issues it is natural to want some quick results to show for the effort. Natural but not necessarily realistic. Claire

[Guest Viola]

I root beer gluten free? I was under the impression that it had malt in it. Has anyone checked this out?

[insomyr]

A&W products are gluten free. I've checked several sites and every site that mentions A&W claims that their root beer is gluten-free (some lists of gluten-free products don't include A&W but all of the sites that do mention A&W state that their products are all gluten-free).

Open Original Shared Link (about 3/4 down the page)

I know that no single list is exhaustive or to be considered 100 percent reliable but I have seen the same information on other lists.

Thanks again everyone for throwing your 2 cents in. I'm confident that I'll get to where I'm supposed to be - it just sounds like my doctor is either too optimistic or perhaps not well versed in the recovery process with Celiac.

[Guest Viola]

Insomyr, thank you for that, I never even checked their root-beer thinking that all would have malt. It would be really nice to have a mug of it It's been over 17 years because I was told in the beginning not to drink it, and never thought to question it. Goes to show what thought did

[Guest mvaught]

A&W products are gluten free. I've checked several sites and every site that mentions A&W claims that their root beer is gluten-free (some lists of gluten-free products don't include A&W but all of the sites that do mention A&W state that their products are all gluten-free).

Open Original Shared Link (about 3/4 down the page)

I know that no single list is exhaustive or to be considered 100 percent reliable but I have seen the same information on other lists.

Thanks again everyone for throwing your 2 cents in. I'm confident that I'll get to where I'm supposed to be - it just sounds like my doctor is either too optimistic or perhaps not well versed in the recovery process with Celiac.

thanks so much for the link to the ourturn website - it is so helpful!

-michelle

[Rachel--24]

It says on the Delphi list that Garden of Eatin chips CANNOT be guaranteed gluten-free due to shared equipment. I dont know if some people eat these chips w/out any trouble but I dont eat them...I just dont take chances with cross-contamination.

Also have you checked your cosmetics, lotions, hair products etc? Especially make sure lipstick or chapstick are gluten free.

[Guest mvaught]

It says on the Delphi list that Garden of Eatin chips CANNOT be guaranteed gluten-free due to shared equipment. I dont know if some people eat these chips w/out any trouble but I dont eat them...I just dont take chances with cross-contamination.

Also have you checked your cosmetics, lotions, hair products etc? Especially make sure lipstick or chapstick are gluten free.

I'm in the process of checking cosmetics, etc. I have found that some of the Aveda products (they very quickly sent me an extensive list - just email through their website...if anyone wants a copy - just message me and i'd be happy to forward it) are Gluten-free (my face wash, exfoliator, moisturizer, foundation) and others are not..I think my lipstick is not - anyone know some good Gluten-free lipsticks?

Also, FYI, At Whole Foods, there is a product line called Aubrey Organics and they stated:

Thank you for contacting Aubrey Organics.

In response to your e-mail all of our products are gluten free, unless the

ingredients state wheat proteing, or oat protein.

We do not have any prepared lists of the products, that are gluten free,

however if you click on the description of the product, the ingredients will

come up.

Hope this is helpful for someone.

-Michelle

[gabby]

PS-I thought the nut thing (flour to keep from sticking) was a celiac urban myth?

[Guest mvaught]

It says on the Delphi list that Garden of Eatin chips CANNOT be guaranteed gluten-free due to shared equipment. I dont know if some people eat these chips w/out any trouble but I dont eat them...I just dont take chances with cross-contamination.

Also have you checked your cosmetics, lotions, hair products etc? Especially make sure lipstick or chapstick are gluten free.

Speak of the Devil..I ate Garden of Eatin' blue corn taco shells tonight not remembering the brand name that you mentioned (since you spoke of the chips - i just forgot to add two and two) which of course mention nothing of gluten on the packaging and indeed now I am sick! Apparently not only can they not guarantee - they absolutely are cross contaminated!

-Michelle

[Packard]

My symptoms are less severe than most of yours and I complained early on. My doctor never came up with a diagnosis. After 6 months of distress I came across an article in the local paper about an entire family with celiac. I decided to try a gluten free diet. After 2 days most of the symptoms were gone and after a week I felt fine.

But then my immune system said, "It's not nice to mess with me". And it nailed me with psoriatic arthritis. The medications for the arthritis suppress the immune system and I'm sure it helps keep my celiac condition under control.

Minute amounts of wheat do not bother me and if the wheat appears way down on the ingredient list I ignore it. Highly processed wheat (beer) does not bother me either, and there appears to be little consensus on whether beer can be consumed by celiacs or not.

It appears I caught the disease before any damage had been done to my intestines and the change in diet eliminated the irritant.

I wish you luck. Everyone heals a different rates. Give it time.