lynnelise

I often travel and so far haven't had too many glutenings but I have a weird sort of situation coming up. A relative is going through a very rough time, previous to this she booked a two day trip to visit a friend over Memorial Day. Basically the issues she has been going through have left her pretty devastated. Everyone agrees that this trip will be a huge help to her but she is already so nervous she doesn't want to fly alone. The friend she is visiting says it is fine with her if I come along and stay at her house. Other than general nervousness about flying I'm ok with that part because it's only an hour so I don't have to worry about meals or whatever but it's the actual two days with the friend that are causing me stress.

All my other vacations I make a point of driving, choosing hotels, and picking restaurants. I always have a safe plan as to what to eat and where bathrooms are plus by driving I'm in control of when and where we go. This trip everything is pre-planned. A cookout the night of arrival. Staying with the friend and her family. The next day a beach day and dinner at her in-laws. I'm planning on bringing what gluten free food I can and honestly spending two days eating Larabars if that is what it takes. I just can't get over the fear of somehow getting sick and having stomach issues with no control over the bathroom situation. She has three kids so gluten is likely to be everywhere. I already feel like I'm kind of intruding, but she won't hear of me getting a hotel and honestly I don't have a lot of cash for that after booking the flight. I don't even know what I'm expecting to get from you guys I just needed to vent because I'm so worried!

My thoughts and prayers are with you and your son!

I find after a glutening my stomach is unpredictable for a week or so. I'll cycle through good days and bad. Also I'm more sensitive to fats and spices until things heal up so I try to eat kind of light.

As to the Hershey's Almond, I eat these without issue. Hershey isn't so good at disclosing CC and such but last I read the Hershey and Hershey w/ almond bars were being listed as safe by the company.

Congratulations on the new house!

I would go ahead and make things 100% gluten free. The only exception to this in my home is some regular cereal for my husband on occassion (though he usually decides to get something we can both eat) and some frozen chicken pot pies. He has an unhealthy obsession with those but I don't mind as they microwave in their own package for the most part. He has gotten to where he likes almost all the gluten-free breads, pastas, and snacks that I buy.

If you can afford to stay home and your job won't be at risk then do it. I'd love to take a month or two off but I would lose my job and my health insurance. I take days off now and then as I get sick all the time but it takes so long to build up sick leave that I have to save it for really sick days. So far I've worked through mono, bout after bout of strep, and repeated outbreaks of shingles. Thank God I have a low key desk job! I do wonder if I had been able to take a few months off to recuperate would I still get sick so often and stay so very exhausted? In light of my experience I'd say if you have the opportunity then take it and regain your health! Good luck!

Before I went gluten free I was having two full periods a month. My hormone levels were completely off. I believe that gluten is definately connected. Due to the gluten-free diet I now have normal periods.

A lot of people on the forums do have many intolerances so yes it is possible that you just can't tolerate any of the items listed.

As for the alternatives to dairy do the brands you use have carrageenan as an ingredient? A lot of people have issues with that. Also a few brands of rice milk could have undeclared barley in them. Not sure of the brands right now but if you search the forums you could find it.

Could some of these be pregnancy related? Many people have things that their body won't tolerate while pregnant but they can usually add back after baby. So if you didn't have these issues before getting pregnant then that could be a factor.

I've been eating the Nature's Path crispy rice and it's whole grain brown. They don't have quite as much crackle and pop but they are still really good. I'm interesting in trying these!

I'm so sorry to hear about your dad's diagnoses! Hopefully it was caught in time and will be treatable! My thoughts and prayers are with you!

Thanks for the warning! I know a lot of people who take risks on the diet with shared fryers and the like!

I live on Pepto after a glutening! Definately should be safe to take and will help control symptoms if you have places to be and things to do. Usually after the D has passed I feel achy and really tired for a few days. It makes things rough but usually not impossible to get to work and do what's required. I also notice my stomach is very sensitive and bland foods are good for a few days! Hope you feel better soon!

I live in a mostly gluten-free household so I don't have much advice there. On the few occassions gluten is in the home I just make sure to wash my hands a million times and I never prepare food directly on the counter. Always lay parchment or foil down! I also wipe handles for the fridge/stove/microwave/doornobs down just in case!

I am so sorry! How rude of that doctor. My doctor likes to go on about my weight too. I think they have very little training in sensitivity! I'm not obese. I can usually wear a size 10 but my doctor goes on and on about my needing to get this weight off me. In fact on my copy of my last lab reports she stamped a reminder to diet and exercise for weight loss! This was after she praised me for my great cholesterol and blood sugar numbers! I know how bad it makes me feel at 33 when I'm well adjusted to my body shape, so it's definately unacceptible to treat a 16 year old that way! This doctor sounds like an all around idiot! I wouldn't trust anything he said about celiac or your size!!! For the record body aches are a major symptom of glutening for me too! It's very common and this is info he should know even from reading a fluff piece in a magazine let alone medical literature!

False negatives are not that uncommon. If you think your symptoms sound gluten related then I would go on a strict gluten free diet for a few weeks and see if you feel better! I say trying the diet and seeing how your body responds is the real test!

What kind of testing did the doctor do?

I've seen that a lot of celiacs start out with a lot of foods off limits but actually are able to add some back without reaction after their intestines have healed.

Some chili powder has gluten in it so I would check that first. Also could your husband have used a scratched pan that has cooked gluten or a wooden spoon to stir that has been exposed to gluten? I'd say cross contamination is the most likely culprit.

As for the float I assume the ice cream was purchased specifically for the float? I once got sick from ice cream because my mother-in-law scooped it with same spoon she had scooped peach cobbler with. Otherwise Breyer's is a Unilever product and they declare gluten on the label if it's present.

Thanks for all the advice. I can't see the specialist until June 23rd! I may try to get in without a different one. I'll keep you posted!

I've gotten sick at my mother's house eating verified gluten free foods so I feel it had to be the cookware. She's got a lot of older/scratched items. Since I've told her to only use non-scratched cookware, metal utinsels, and/or disposable pans I've not had any trouble.

The treatment is the same either way. gluten-free diet. However having an actual diagnoses could make things a bit easier. I do not have a "real" diagnoses because I had an EGD a month before to look for an ulcer and they saw inflammation but didn't biopsy. I couldn't afford to have the procedure redone so I just started the diet. The only issue I've had with this is that I cannot get certain vitamin levels checked because my insurance needs some sort of proof that there is a reason I could be deficient before it will pay. Other people find it hard to remain on the diet if they don't have a true diagnoses so if you think that you will get frustrated on the diet and waver then by all means wait and get the testing! Also consider that some people have had negative tests but still saw great improvement on the diet.

I have gastritis and when it flares up my stomach will burn for a week or two. I find drinking coconut water can help soothe it! Plus being extra careful about spices and acidic foods.

It seems there is a bit of evidence that magnesium deficiency could play a part in stuttering but I can't really find any conclusive articles stating this.

I don't have any concrete advice or knowlege here but I thought I'd mention that a friend's son has autism and I've noticed that he developed a stutter and it actually seems to be worsening since she has eliminated numerous food items. His diet is very similar to GAPS with several additional items eliminated. He did not stutter before she started his diet.

So far I have always managed to have sushi safely. I usually order King Crab california rolls (make sure you stress it has to be real crab!), tuna and salmon rolls w/ avocado, and the philly roll. Nothing with tempura crunchies on top. I get miso soup to eat with it because I confirmed with the staff that it is free or wheat and soy sauce.

Indian food is often safe. Be sure to ask if they use asofoetida/hing because this can be a source of gluten! Also take your normal precautions with anything fried as it is likely to be CC.

I had terrible trouble with tingly spots in my legs and feet. I took B12 shots for awhile and then switched to the sublinguals. I have no issues now that my levels are high! Good luck!

I'm not sure of the exact tests but I did have some blood work that was supposed to see if cancer was a possibility and they came back ok. That's been around 2 years ago. My blood counts come back normal. Blood sugar always checks out fine so I don't think it's diabetes. Hopefully the immunologist will be able to figure something out.

Thanks for the info on low dose Naltrexone. It sounds really promising!

I think the more confident and matter of fact you are the better people will react. Say it like it is no bother. "I'll just be ordering drinks, I have celiac disease so I thought it would be easier to eat at home." Just say it like it's the most natural thing in the world and people probably won't think twice.

If people ask you questions and seem genuinely interested you can give them an abbreviated version of the diet and CC concerns. If they act all dramatic and say things like they would die if they couldn't have bread just say something about how it's actually quite easy to do without or how the disease is fairly common and not a big deal. Lastly if these people actually bring it up everytime and "bust your balls" about it I would just be blunt and ask them why they don't seem to have something more interesting than your food choices and medical history to discuss.

I tend to get sick when the weather changes but I believe it is sinus related.