» I Fell Off The Diet--, --so now I'm conducting scientific research! Options

[Imanistj]

After struggling with the decision to stay on the gluten-free diet, I went off tonight. In my quest to find something I liked for breakfast I made Rice Crispy Treats with gluten-free cereal and gluten-free marshmallows. I bought a bag of Wegman's marshmallows two days ago and then began to wonder if they were really safe. The ingredients didn't specify any allergens but they did list natural and artificial flavors. I wrote to the company and they answered that the marshmallows are not gluten-free. Today I stopped at a different store and bought Food Club marshmallows that my Cecelia's book lists as safe. Just as the marshmallows and butter were almost mixed something made me pick up the empty bag and check the brand. I had used the Wegman's brand instead of the Food Club's. I thought about throwing it all away and then I decided since I don't have the terrible sprue type symptoms, and because I don't feel any different since going on the gluten-free diet, that I was going to eat the Treats and see what happens. I may toss the rest in the AM but I won't decide until I see how I feel.

Since I first went on the diet back in August (but interrupted it for the biopsy) I have spent hours every day researching gluten-free and celiac in general. I had finally decided to stay on the diet at least until January 1st, or possibly until my next appointment in May. I am very curious to see how I feel tomorrow. Since I am tTG and genetically positive, but have no small intestine damage I guess I am a latent celiac. I was a latent diabetic for 30 years before I finally converted. I also tested positive for lupus around 20 years ago (haven't developed lupus yet) and recently tested positive for autoimmune liver disease, but all liver function tests are normal. I think I have a tendency for false positives for autoimmune diseases.

I honestly meant to stay on the diet and wonder if my mix up with the marshmallows was a subconscious desire to thumb my nose at the gluten-free diet or a real mistake. I don't know if I should feel stupid or defiant. Right now I am doing something very odd. I am a terrible typist and always transpose letters, but now that I am an hour post glutening myself, I am transposing letters in almost every word. Gotta love my spell checker. Oh, the Treats are pretty good but I am able to tell they are not the real thing. The rice is crunchier and tastes slightly different.

[ravenwoodglass]

It does sound like you are reacting. The GI stuff may take a day or so to appear but I wouldn't be surprised if you are a bit more emotional today, I say that because my brain fog is usually accompanied by depression and irritability. No for sure that you would have the same effect.
I do that transposing thing to and I find that one hand works faster on the keyboard than the other when I get glutened. Usually when I transpose it because the keys are on opposite sides of the board. Since I had more severe nerve issues on the right than the left I think that's why.
Don't assume that a negative biopsy means you don't have villi damage. You have 22 ft of small intestine and the damage can be patchy which is why they say to take a large number of biopsies. There is also something called a 'Marsh Scale' which is the stages of villi destruction. Some doctors do not diagnosed if you are only in stage 1. Those are usually the ones who tell us to keep eating gluten and come back in a year and they will rescope and see if the damage is more severe.
I am really sorry you are having such a hard time. It is so hard to deal with doing what you are supposed to and still feeling bad. So many of us have other intolerances also which does make it even more difficult. That may be what is going on with you. As much as I hate to say you should restrict your diet further you may want to consider deleting soy and casien for a while and see if that makes a difference.
Also about Wegmans. If you don't see the circle G on an item usually it is not safe. The exception to this is single ingredient items like coffee. This applies even if the item is the same thing but a different size container. I called once about some nuts. The large container had the Circle G but the small one didn't. The rep said that they came from different sources and one was not safe so it didn't have the G. They also don't consider distilled gluten grain vinegar gluten free like many companies do. It was nice to be able to buy barbeque sauce and pickles again. While not all celiacs react to distilled gluten grains I am one of them and apparently whoever in the Wegmans founders family who has celiac does too. I am very thankful to live near a Wegmans as they do make the diet so much easier.
I hope the marshmellows don't hit you too hard and that you get some answers and are feeling better soon.

[Imanistj]

I woke up a dozen times before I wanted to get up today. I have considerable fibromyalgia pain which is always at its worst when I wake up.. Now that could simply be a coincidence but it has definitely caught my interest. My doctor says I don't have any bowel involvement. He frequently makes concrete statements that leave me wondering how much I believe in him. He is well regarded by other local doctors and celiac patients and I am a highly emotional person. I want to remain calm while making any decisions about him. I really wish I could get a second opinion but I am concerned that my Medicare and AARP insurance may balk. I pretty much have to wait until May when I see him again. If I am still not impressed with him I think I will go off the diet and start the process of getting an appointment with either Columbia in NYC or Beth Israel in Boston. I have extreme difficulty coping with not having all the answers about everything, even minor issues. I research and ponder and wring my hands over even small issues--that is just how I am. It is probably good for my character to be forced to wait six months until my next opportunity to do anything about my situation. It isn't as if the wait will hurt me because I will stay on the diet, but I will be gnashing my teeth the entire time. I believe if I stay on the diet and keep taking iron and B12 along with my multi vitamin and calcium, all my blood work will look great in May. Unfortunately, what I really want to know is how bad things would look, especially a repeat biopsy, if I were to go off the diet and meds for a while. I think having my gall bladder removed last March was the trigger for my celiac. I had never had any vitamin deficiencies or anemia until my fibro doctor started hunting for anything that could cause increased muscle pain, inflammation and fatigue. It's going to be a long winter for me
Nancy

[TrillumHunter]

There is no way your doctor, by way of endoscopy and biopsy, can say you don't have ANY damage. It isn't possible to biopsy the entire small bowel. It is possible to have patches of damage that cannot be seen with the eye and only reveal themselves with biopsy.

You have celiac. You have celiac. As difficult as it is for you, this is your reality. A little damage or a lot, the treatment is the same: a strict, life-long gluten-free diet. To avoid following through with that is to court severe, and possibly irreversible, damage to your already compromised immune system.


You can do this. I have complete faith that you can take care of yourself. This board can help. You are in charge of your good health!

You can do this, Nancy!

[Imanistj]

Thanks for the encouragement and support. I'm heading out to Syracuse to the De Witt Wegmans to sample gluten-free food. They have a tasting session every Saturday from noon to 5.
Nancy

[txplowgirl]

Hi Nancy
I really hope you stay gluten free. Hang in there. I just wanted to say that as a fellow fibro sufferer, I have found that nightshade vegetables cause my fibro to flare really bad in the mornings. I know you don't want to cut any more foods out of your diet but this can definetly help with those morning flares. Also yor RA if you have that too.
Good luck