So Many Questions...

[chefling]

Hi everyone,

On one hand I'm certain enough that I am gluten intolerant to go gluten free without the blood test. On the other hand if I do have celiac diseae then my son and his children along with my siblings should also get tested shouldn't they? So I feel obligated to continue eating some gluten until my blood test on the 15th. However I feel miserable.

After being off gluten for a couple of weeks I re-introduced it and woke up about 5 hours later getting sick at my stomach, I then felt bloated and miserable most of the day. I continued eating gluten and had D the following day. I then stopped eating gluten and seemed to spend most of the day in the bathroom to pee. Is this normal? Even though I continued to eat high amounts of carbs in sweet potatoes and fruits?

Another q I have is... If one eliminates grains but continues to get gluten in other ways such as soy sauce, cough drops etc... would you still feel better? Perhaps not as well as you could but then wouldn't you feel better just by injesting less? The reason I ask is that I thought I was gluten free but still feeling bloated but no D and found that the cough drops I have are not gluten-free and I haven't even begun to look at my soaps and shampoos etc.

The next question is... could it be that these symtoms are from lactose and not gluten?

My symptoms include the following:

Although I consider myself pretty healthy, people comment on how I always seem to be sick.

They also comment on how tired I look even though I don't always feel tired.

It seems when I eat large amounts of gluten then I do feel tired for about 3 days.

I have allergies and my nostrils are always dry.

I've gained about 40 lbs and can't seem to lose it.

About 5 years ago I use to get a small patch of scaly blisters on my forearm each spring. It would last for about 3-6 months then go away. It has stopped appearing.

One of the glands underneath my right earlobe itch on the inside.

I feel much better without eating grains but most grains contain some milk products as well as gluten.

Your opinions are greatly appreciated.

[kbtoyssni]

Yes, your children should get tested if you have it. But dietary response is enough to diagnose (in my opinion). If you feel better gluten-free, why make yourself miserable for a few more weeks just to take a blood test? Depending on how open your son is, he may get tested even if you go the dietary response route. A blood test isn't too big a deal so I don't see a problem with them getting the test even if you haven't done it. If your son will be super skeptical an not get tested unless you have a positive from a doctor, then you might want to go with the blood test. You could also ask your doc if you can get in sooner. If it's just a blood test, you may not even have to see your doc. I called my doc asking for a blood test, and I saw the nurse who takes all the blood at the clinic the next morning without even having an appointment with my doc.

You might initially start feeling better if you just cut back on gluten, but it's still doing damage to your body and you will still be at as much risk for complications like cancer, brain fog, depression, osteoporosis, malabsorbtion, etc. And eventually I would think you'd start feeling just as badly again. Your physical symptoms may not be the best indication of how much damage you're doing to your body. Some celiacs are asymptomatic, and they're still doing damage.

It is entirely possible your symptoms are from lactose or casein. You may be temporarily intolerant to lactose while your body heals as well and you'll be able to go back on it in a few months.

[chefling]

Thanks so much KB,

My son is 28 with a mind of his own and a love for bread so it's not likely that he would give it up on my suggestion alone. I will call the doctor and see if I can just drop by for a blood test. I hadn't thought of that. Thanks.

I do want to go strictly gluten free regardless of the test for at least 6 months to see how I feel and see how much energy I have. I'd also like to lose weight. I vacillate between thinking I have GI and thinking I don't because so many lose weight yet I have gained. I do have low sugar and low iron though and wonder if it's due to malabsorbtion along with a lot of gas when I eat wheat.

Thanks for the information.