chatycady

Thanks for the responses, they were both very helpful. My dad's blood test was negative and so was the stomach biopsy. He now says his skin condition is getting better. I've decided he doesn't really want to know if he has DH as he doesn't want to give up the pizza buffets and chinese buffets. If he gets sick enough I suppose he wil ask quesions.

Diets are very personal and very hard to change. It takes a crisis and even then many go back to their eating habits.

But not me! And I feel great after many years of misery!

Thanks

Thanks Franceen! That was a great reply. You are right it is only "food" and I am not the only one frustrated by Dr's! I needed to read that tonght.

Thanks a bunch.

I need expert advise, so I've come to the experts. I think my father has DH. I am on a gluten free diet, as I have had many of the symptoms ie iron anemia, Pernicious anemia, digestive, balance issues and much more and am cured on the gluten free diet.

Is it true that a blood test for celiac and stomach biopsy can be negative for celiac, but the skin biopsy positive for DH?

Is it true that a skin biopsy is the "gold standard" for DH.

Is it true DH is another gluten intolerance that is different than celiac?

So why does the Dr. want to do a blood test and stomach biopsy for my father who has an obvious skin issue? I'm afraid if they both come back negative, they will tell him he doesn't have a gluten issue and that his skin problem is "what old men get". (He was told this my a nmber of Dr's. already).

Any help with this would be greatly appreciated.

Chaty

I think I wll go back and have the test taken again and see if the blood test comes back "normal". I'm just worried that some day when I'm old and sitting in a nursing home, they will start feeding me "gluten" because I don't have a "real" diagnosis!

From what I've read in a couple books that I have, (dangerous grains and Celiac Disease a hidden epidemic) they say it can take 1 to 5 years of eating gluten to have a positive test. They don't recommend it at all. A gluten challenge should only be for a day or two and only to see if there is a physical reaction.

So, is it the lab that decided my test was "equivocal". Are labs different? And is it in their interpretation of the result? Another lab would call it negative? or positive?

  happygirl said:

It depends on if you went gluten free or not, and what the purpose is of testing.

Yes, I am gluten free. I want to make sure I'm healing and I'm worried about cancer. My mom died of cancer, my brother has thyroid cancer. I guess I want to know if I'm on the right track.

Will the numbers go down if it was a gluten problem?

  ravenwoodglass said:

Are you still on the diet? Are you feeling better? Retesting is done sometimes to check whether their levels have gone down. Many doctors will retest at 6 months or a year to check.

So does my original blood test really mean anything? Is it worth retesting now?

Hi all, I was on a gluten free diet 15 days before I had this blood test done. Can anyone help me interpret this?

Tissue Transglutaminase, IgA 7.7 reference 0.0 to 19.9

endomysial antibodies Ab screen negative

Gliadin Antibody IgG 28.6 equivocable 25.1 to 49.9

Gliadin Antibody IgA 38.3 equivocable 25.1 - 49.9

IgA 257 reference 70-312

Doesn't equivocable mean - not negative and not postitive? Unclear? Deceiving? Maybe, maybe not?

This test was done a year ago, now I'm thinking of having another blood test to see if the IgG and IgA is down and no longer "equivocable" and hopefully negative. Do you agree?

Thanks for your help.

Do you have a blood sugar problem? Your symptoms could be many things, but they sound similar to mine. And I have hypoglycemia. Celiac can mess up blood sugar. Just a thought.

I would skip the peanutbutter and banana's for now.

MSG and Corn Starch would do me in! A very bad combination for me!

Hi all;

I just wanted to let all the hypoglycemia celiac's know that I have found magnesium supplements have cured me of hupoglycemia. I have been faithfully gluten free for about 10 months, and was slowly getting better, however my blood sugar would get so low I couldn't function at times. I was on a high protein diet and gluten free. It was tough to find food choices.

I also read that a magnesium deficiency can cause food allergies. I no longer have reactions to peanuts, corn and dairy since adding magnesium supplements.

Hope this info helps others too.

Take care.

Chaty

Here's my recommendation and what I eat. Glad to hear you are healthy again!

Breakfast

Coffee and egg, sausage, or ham, steak, bacon. No carbs. (No fruit juice - it's too sugary and will make you hungry in an hour or so.)

Mid morning - apple with peanut butter or cheese, almonds, low carb yogurt.

Lunch - Subway salad with chicken breast. Gluten free dressing (Or your own salad, with tuna add nuts)

Mid afternoon - almonds, cheese stick, lunch meat, celery with cream cheese spread on them, add sunflower seeds for crunch, peanuts, mixed nuts. Diet pop. Dill pickles, olives, or even a can of green beans.

Supper - Red wine, Steak, Ham, Roast beef, pork chops, shrimp, fish, veggies, 1/4 serving of baked potato with skin, or wild rice. Fresh strawberries or fruit with cool whip, Ghiredellis dark chocolate. Planters dark chocolate covered almonds. MMMMM!

Snack - Nuts, fruit, cheese. (I can't eat Dairy, but hope to someday, would love a cheese stick!) It's got 5 servings of fruits and veggies, and all the complex carbs you need plus protein. I use lots of real butter on my veggies, cause us celiac's need good fats. (Egg's provide lots of Omega 3)

Good luck.

Chaty

Do you like your job?

How is your marriage?

Are you depressed?

Do you have teenagers?

I was anemic at age 19; anemic through 3 pregnancies, really really bad. Then I finally was diagnosed, with a hemoglobin count of 7 (transfusion time) with pernicious anemia. Then a month later I was iron anemic again, then an enlarged heart and low blood sugar, and low blood pressure.

And still no diagnosis. After the last specialist didn't even take time to read my file, I quit Dr's. went to the local grocery store Hy-Vee which has a gluten free food list and a nutritionist on staff who was extremely helpful and I am on my way to recovery.

Thanks all! It has helped.

I went out and bought some regular Starbucks coffee and it made a difference. I just need my cup of joe in the morning. I don't drink caffeine the rest of the day. I've had to give up so much, I hate the thought of giving up coffee too!

So now the question is does the decaf I bought have gluten in it? Or is it the processing that causes me trouble. I guess I will never know!

Thanks all!

Chaty

I mixed coffee beans together, half decaf and half regular. Neither were "flavored" but I think I'm being glutened slowly by my cup of Joe. It's the only thing I changed last Thursday and am having symptoms. Off balance, brain fog, tired, back ache and I think the digestive issues will start soon.

Is plain coffee a problem? Someone told me I can not drink any decaf, is that true? I though plain coffee is always okay, but why do I feel so poorly.

I switched the brand on one, threw the bag away so don't know what brand or what it said on the bag.

If it says 100% Arabic coffee is it okay?????

Dizziness, off balance is the first symptom I have after eating gluten. Riding in a car or any movement is difficult. Also my eyesight is poor.

I also have trouble speaking at times. My mouth will "jerk" funny. Can't explain it, but it messes up my speach

String cheese, any cheese, gives me terrible back aches and stomach pain. I thought I had a kidney stone once the pain was so sharp.

Hope you feel better now.

I doubt if it's lack of B-12. I use to blame all sorts of symptoms on lack of B-12, but now I realize it was gluten. Now I forget to take my B-12 shot, cause I have no symptoms and have lots of energy

Will that low gluten wafer make you sick? I thought any amount of gluten caused the autoimmune response?

I've had lots of upset stomachs and protein helped me. I eat one scrambled egg in the morning. If it's real bad take Dramamine - gluten free kind of course. It worked for me. I also have a blood sugar problem, which is related to celiac.

Hope that helps. Also, I used to keep a handful of almonds next to my bed and would grab them first thing in the morning. They are very good for you and have protein.

Don't need to do any of this now. I'm much better, but still must always eat protein at every meal and fruits and veggies. Hope you get over the nausea and get healthy again.

Foot cramps, leg cramps, cramps in my hand and even jaw! I've had it all, now very rarely. I've been gluten free for about 4 months. I have had a few accidents and each time the cramps came back. Every week I get stronger and more symptoms go away.

I've also noticed this month, no monthly cramps! Alleluia!

I am 51, I have all the symptoms, but all my tests were normal. During one of the Dr's visits he suggested he thought I had Celiac. I decided to check it out and start the diet. Within 48 hours I saw an improvement, so much so, that I chose to continue with the diet.

From what I have read, celiac is only one of many subsets of "gluten intolerance". Some Dr's believe that eating gluten can cause the immune system to attack other parts of the body. Only celiac can be diagnosed at this time. Other Dr's. think flattened villi are the "end stage" of celiac disease and many go undiagosed until they are really really sick.

So, get your mom on a better gluten free diet. Ditch the crackers and peanut butter and start simple with foods that are not likey to cause an allergic reaction.

I recently read that many menopausal or soon to be menopausal woman have trouble with wheat.

Take care. I hope your mother gets better. But please stop those crackers unless they are gluten free.

This website is full of good information.

Chaty

I accidently ate some lunch meat that I thought was gluten free today and I am having the head issues you describe. I also have noticed an acute sense of smell. when glutened. I was always told I have a nose that can smell anything a mile away, but now I think there is a connection with gluten intolerance. This "extra sensation" has gone away while on the diet.

I would agree it's either from a different food allergy or residual affect of gluten.

A gluten challenge after a period of gluten free can actually be dangerous. We need a better diagnosis! Forcing the body to get "sick enough" to determine a correct diagnosis is actually, in my opinion, nuts! It's like telling someone with heart disease to create a heart attack so the Dr. can diagnois heart disease.

I hope you give up the gluten challenge for your child and stick with the diet.

A friend's daughter has been having all sorts of digestive problems. She is miserable and is throwing up, misses school, has terrible heartburn, she's struggled for years, but after visiting with Dr's. the past two months, they are still debating on whether or not to do a biopsy. She isn't losing weight, or anemic so they do nothing. Just think of the damage being done as they sit and take a "wait and see" attitude. She could be on the diet getting better, or at least she could try the diet. But she isn't given the opportunity, because she is a child. Sad.

I've been gluten free for about 2.5 months. Here is what has changed for me

1.) I remember peoples names.

2.) I am no longer anti social

3.) I have my self confidence back!!!!!

4.) I am riding my horses again, I was so fearful when eating gluten. I worried of falling off, getting hurt, etc. etc. etc.

5.) I have energy!

6.) Sleep like a baby

7.) No more back, stomach pains

8.) My muscles are toned and getting stronger

9.) My skin is pink and smooth, no longer pale and dry.

10.) I have LIPS! Before they where pale and just faded into the rest of my face. (Wierd, I know!)

11.) Libido is back!

GIve them lots and lots of water, warm baths and back rubs, and be there for them, even if they are whining and carrying on! They are young they will rebound quickly!

I too had a terrible back ache, even after I went gluten free. I at on point thought I had passed a kidney stone the pain was so severe! I then read that dairy could be causing the problem. I eliminated all dairy products and within a few days I felt much better.

I found dairy causes me sharp stomach and back and shoulder pain.

Gluten causes brain fog, dehydration, fatigue and low blood pressure and chest pains.

Peanuts, heart flutters, skin flushes, and fatigue.

I hopes this gives you some insight and you start to feel better soone!