Frogleggs Needs Our Guidance

[SGWhiskers]

Frogleggs, I saw this response from you on another thread and I thought you deserved your own thread. I'm recently diagnosed, so some of the veterans will be better at giving advice. Veterans, can you join in?

In the first line, Frogleggs is referring to the headache symptoms that the other poster was experiencing.

Hi: I am going thru this now. My headaches are so severe, I think I am having a stroke. I was tested thru biopsy for celiac which was negative, My gluten test panel was negative on all but one! That is where they left me at. If I eat a lot of bread, cookies, etc., my allergies kick, congestion, feeling sick in the stomach, etc. I also develop yeast problems from this. Sometimes I get panic attacks with these also. It is so complex and scarry. I don't gain weight easily and I need to eat rich fatty foods. Then I am sick again. I also get compulsive when going thru this. I go on crazy shopping sprees with no judgment option. It never fails. Can someone educate me on how many panels are in the test and if 1 is positive what does that mean?

[SGWhiskers]

Frogleggs,

If one of your tests came back positive for Celiac, you need to stop eating gluten now. If you continue, you are risking your health, permanent damage, and possibly your life.

Eating gluten free means not eating a speck of any food with wheat, rye, barley, tricticale, and oats. (In 6 months, you might be able to add back oats). There are some good food lists on this site and the web. I will hunt for some of them for you. You will also have to change some of the way you do things in the kitchen and some of your cooking tools. After a bit, it will get easier, and you will figure out some other grains to substitute for wheat and oats.

First step, (tonight)

No more pastries, cookies, breads, pancakes, pasta, crackers

No beer

No sauces/dressings

No processed foods

No crumbs

Second step, (Tomorrow or Wednesday)

Go buy a bunch of fresh fruit, plain veggies, rice, potatoes, and meat.

You will live off of these for the next few weeks.

Also one of the plain Crest toothpastes

and an old fashioned stick of CoverGirl lipstick (if you are a girl)

and a multivitamin that says "Gluten Free."

and a plain Hershey's bar to make you feel happy

Third step, (Try to do this by the end of this weekend).

Start learning about the details of gluten free eating. By doing this, you will eliminate the remaining trace amounts of gluten from your diet and increase the variety of foods you can eat. After you complete this step, you will have a better idea of what your next steps will be.

Fourth step, (Next week)

Review your cooking tools, medicines, makeup, hygine products, soaps, cross contamination possibilities (pet food is one of mine). Start calling manufacturers and eliminating items derived from gluten. Vitamin E (toceperol acetate) is a common hidden source of gluten in soaps etc. Have your doctor change any medicines that have gluten.

Fifth step, (Once you have eliminated all traces of gluten and gotten into the swing of things)

Start re-learning how to cook nice meals gluten free. You will have a new healthier way of cooking and feeling by this point.

I'll go looking for some more information in the form of lists for you. I've taken some time writing this, so I will probably cross post with someone else. Hopefully this information is not redundant.

SGWHISKERS

[Lisa]

It would be helpful if frogleggs could post the blood panel results. Not all positives indicate Celiac. That would be a good place to start.

This this the panel that should have been taken:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

[Mtndog]

That sounds really scary. Gluten could be the problem but there may be other issues- with headaches that severe you need to get checked out ASAP! Please. Let us know what happens. And in the meantime, go gluten free- it never killed anyone!

[jerseyangel]

Hi and welcome

The correct Celiac Panel consists of these--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Your symptoms could indicate Celiac, or possibly another condition. It's impossible to give an opinion on your positive test, since we don't know which one it was. Post it if you can.

The biopsy is not always accurate, meaning that a positive can rule Celiac in, but a negative can't rule it out. The damage could be patchy in nature, the doctor may have missed it or possibly didn't take enough samples.

Since you've been tested, and you know how gluten affects you--why not go 100% gluten-free. Be thorough, go through your kitchen and personal care products. Read here and ask lots of questions.....we'll help you through the transition.

Headache and anxiety are common symptoms--I had both of them and more before being diagnosed. Hang in there!

SGWhiskers--thank you for bringing this to our attention