Itching, Hives Continuing Symptoms

[Diem]

I have been trying so very hard to be gluten-free and Lactose free for the last few weeks, and I honestly think I have the lactose thing handled, gluten-free is still giving me problems as I am uncertain of a lot of products and with the holidays and all who knows what could have had it, but I tried to stick to the whole foods and simple foods but in resteraunts and other people's houses it has been hard to know if a glaze or a dressing has gluten and I am not at the point to make a big production of asking and explaining yet. My question is this, I have been feeling so poorly, still losing weight, upper back pain, still having cramping and abdominal pain which I am managing but now I am breaking out in hives and have intense itching in my palms and my feet beyond the itching hives (I do have a GP appt today) but has anyone else had this issue, is it connected? I took Benedryl this morning and it helped with the hives but not my hands and feet (but now feel ill again and was hoping to feel better)

[1desperateladysaved]

There is a rash connected with celiac that we usually call "DH."  Also, one can react with hives, but I believe that would be considered an allergy. 

 

You must avoid gluten 100% in order to get well from celiac.  This means you do not eat  anything which could have touched gluten or some utensil that touched gluten.  Some people dine carefully in restaurants carefully instructing those who handle the food, or by going to restaurants that have a gluten free option.  Even these must be checked as often times they do not take care of people with celiac.  A few of us cannot eat out at all.  Some of us share their kitchen with gluten eaters and some will sicken if they do.  You may want to use more caution, so that you can recover.

 

I had trouble with my feet during recovery.  They swelled even more than usual for a while.  It isn't too shocking to have some sort of change in symptoms after going gluten free.  I think the body is better able to complain and let you know what it doesn't like.  You are doing the right thing by being on the forum here and trying to learn more.  It can be overwhelming and tricky at first, but it is worth the effort when one feels better.  Caring for yourself means that you do have to ask questions about the foods you eat.  My plan is not to take anyone by surprise and bring my own food.  Others have some friends that can be trusted to cook for them. Possibly you could find trusted restaurants in your area and suggest them as the place to go when and if someone asks you.

 

Best wishes in learning and healing,

 

Dee

[bartfull]

I checked back through your posts and it seems you have an appointment for an edoscopy with biopsy next month? You should be eating gluten until testing is over with.

 

Once testing is done you need to get strict with the gluten-free diet. No eating ANYTHING you aren't 100% sure of. That includes things friends or family make for you that they THINK are gluten-free. Cross contamination is likely and it will make you sick and cause damage to your body.

 

I eat only things I have cooked myself. I plan ahead so I don't get caught without food. If I'm going somewhere I either bring my own food or eat before I go. I keep gluten-free snacks such as Lara Bars on me at all times. They aren't a meal but can hold me over until I can get a safe one. I cook in large batches and freeze portions so I can grab one for convenience sake.

 

While you are waiting for the endoscopy you should read the Newbie 101 thread in the coping section if you haven't already. If you have, read it again and take notes. Avoiding gluten in the things you buy is not as hard as it used to be. Wheat MUST be listed in the ingredients labels, rye is pretty much only found in rye bread, so barley and oats are the only things you have to watch out for.

 

There are many companies such as Kraft, Con Agra, and quite a few others that will list ANY gluten ingredients and also if they are made on equipment that also processes gluten.

 

For myself, I eat mostly whole foods. The exception is bread, and both Udi's and Canyon Bakehouse seven grain are safe and delicious. If you can't find them, Schar multi-grain isn't bad either. The other processed food I eat on a regular basis is Planter's nuts. They are always safe if you read the label and see no gluten ingredients.

 

You will need to learn to read EVERY label, EVERY time because ingredients change.

 

It all sounds hard but believe me, after a while it becomes second nature. The only time I even think about celiac is when I am in the store reading labels. Once I buy stuff I know is safe the only thing I think about is how good it's going to taste.

[nvsmom]

Ditto the others. When it is time to be gluten-free you must be 100% gluten-free, but if you have more testing coming up you should not be gluten-free yet.

 

It takes some people a long time to get all better once gluten-free. I was still having such extreme pain that I was convinced that I must have RA or lupus.  Some of my symptoms became much worse before they started improving at 6 months gluten-free.  You may just need time.

 

Keeping a food and symptom journal can also help you keep track of symptoms and notice problem foods.  With food sensitivities, like celiac disease, symptoms may appear 2 days after exposure.

 

Best wishes.

[Diem]

Thank you for the suggestions and answers. Still itching but not nearly as bad, and hives have gone. My GP was not overly concerned at all and said "Probably something you ate." Ya think?!  Anyway I will be giving all this information to the GI on Monday and hope he will be more attentive than my GP. I know I should still be eating glutten but because I have such pain and nausea when I eat anything at this point (Hard to even get a complete meal in) I have tried not to. I started a journal with food and symptoms and will continue that and am presently trying to rearrange my kitchen and gain as much knowledge as I can. Thanks to this forum and all you helpful peeps. Have a great New Year!