Question and Answers – Page 2

Q. Dear Roberta,I have a couple of questions about celiac and gluten flour. I was raised as a vegetarian. I eat many products that are made with large amounts of gluten flour and nutritional yeast.

I am now 65 years old. My dietition thinks that I have celiac disease. I was tested for this 12 years ago and the results were negative. I will be retested next week. My questions:

1. Would eating large amounts of gluten flour cause celiac type symptoms without actually being celiac? Is this as harmful as actually having celiac?
2. Does nutritional yeast have a gluten component?
3. Would eating gluten flour products cause a flare up of symptoms, especially after going gluten free for a couple of weeks?

Thanks for your thoughts on this queries.


A. From what I have read nutritional yeast does not contain gluten.

If you are planning on being tested with another biopsy or a blood test you need to be on a gluten containing diet for at least 2 weeks–some doctors require longer. If you are on a gluten free diet during the test it might show a false negative.

If “pure gluten” flour is wheat flour that contains gluten that would explain your symptoms. I would not eat if if a second test shows you as having celiac disease. You definitely should consult your physician to be retested.

Roberta

Q. Dear Roberta,I was diagnosed with Celiac disease a month ago. My symptoms were not the usual-burning sensation in pit of stomach for a year , bloating and sometimes nausea. After taking all kinds of antacids and drugs for reflux, I suggested Lactose intolerance because frequently after having my morning cereal I felt nauseous. The internist took some bloodwork for this and gluten intolerance. The only thing that came out positive was Gliadin Antibody IgA (32). As a result the doctor told me I had celiac disease and should be on a gluten free diet and he would refer me to a nutritionist which I haven’t heard about yet. After reading about this condition, I’m feeling that maybe his decision was a bit hasty. Shouldn’t I have had a biopsy. Was that blood test enough to change the rest of my life? I would love to hear back from You.

A. We usually suggest that before going on a gluten free diet the patient ask their physician for a referral to a gastroenterologist so they can schedule an endoscopy with biopsy which is the “gold standard” of diagnosing celiac disease.

There is such a thing as a false positive blood test. I stress this is BEFORE going on the diet because the biopsy will not be conclusive while on the diet. Most insurance companies will cover the test if it is ordered to rule out celiac disease.

Roberta

Q. Dear Roberta,Hi, I’m looking for advice… have high cholesterol, struggle with my weight (I always seem to have rather more of it than I would like) and have recently been diagnosed as coeliac. Most of the gluten-free recipes I’ve so far found seem to not especially either low calorie or low in cholesterol. I would be so grateful for any information or assistance you can give me.

A. I have found a good cookbook that might meet your needs. It is called Wheat-Free, Gluten-Free, Reduced-Calorie Cookbook by Connie Sarros. It is in paperback (ISBN 0-07-142375-3) for $15.95 USA/$25.95/£9.99 UK
Hope this helps.

Roberta

Q. Dear Roberta,Have you every heard of arepa flour and is it gluten free?

A. Arepa flour is a precooked corn flour and should not be confused with masa harina. Arepa flour is sold as masarepa, harina precocida, or masa al instante. It can be found in Latin American groceries.

The statement above came from the Food Network website (I had not heard about this before). Corn is gluten free therefore this should be ok. However, I would caution against buying it from a bulk container because it could be contaminated with gluten containing flours.
Roberta

Q. Dear Roberta,What vitamins should I be taking. I was diagnosed with celiac disease one month ago. I am a 63-year-old woman. I am taking a one-a-day and 1 600mg of calcium. I also take a flaxseed oil pill once a day. Is this okay, should I be taking more or should I not be taking what I am. Please help.

A. The best way to determine which vitamins and minerals you might need to supplement is to have your doctor do a blood test. The most common deficiency in celiacs is iron which can be determined by what’s called an “H & H” (hemoglobin and hematocrit). If these tests indicate you are anemic or borderline your doctor will probably tell you to take an additional iron supplement. All women are strongly encouraged to supplement with calcium regardless of whether they have celiac disease or not, so I would say if you are drinking one or two cups of milk a day or equivalent (yogurt, cheese, etc) your current calcium supplement should be adequate. If you do not consume any dairy you may want to consider 2 (500 mg) calcium supplements with Vitamin D (such as Viactiv) per day (taken in the morning and at night because your body can’t absorb that much calcium all at once).

If you are on a gluten free diet now your body should start absorbing food (and therefore nutrients) so it goes without saying to make sure you are on a strict gluten free diet regardless of what supplements you are taking.

Roberta

Q. Dear Roberta, Hello! Well, I am new with this celiac problem. Diagnosed 7/3/06 I have always been a little over weight in my life, and now I am constantly loosing weight. I have lost 12 lbs since the 14th of April. What can I do to stop this. Since diagnose, I have tried to eat a gluten-free diet, and it seems like I am hunting all day to find something I can eat; as I do get hungry, but still loose weight, I don’t think I am absorbing food or medicine. Thank You

A. First you need to make sure you are not consuming ANY gluten. Are you reading labels and avoiding ALL wheat flour, oats, rye and barley? How about malt flavoring and “starch”? Try to go on as “purist” a diet as you can handle (the only “starchy” foods you are allowed are plain rice or potatoes) with no convenience foods or restaurant foods) for about 2 weeks and see if you still have problems. If so you may have another condition that often accompanies celiac disease that is not resolved by going on a gluten free diet. When in doubt, don’t eat it! You definitely want to contact your physician and inform him or her of your difficulties.
Many celiacs also have lactose intolerance, so you may want to try Lactaid products to rule that out as well. Constipation can often be relieved with products such as Benefiber added to foods and beverages.
Roberta

Q. Dear Roberta,

Hi, I’m newly gluten intolerant (well just worked it out!), I’ve gone and bought gluten free flour – can I just substitute this for normal flour in normal recipes?

Thanks

A. It may depend on the type of flour you have. If it contains xanthan gum (one brand that does is Tom Sawyer flour, which I use and highly recommend)
www.tomsawyerflours.com

If your flour does not contain xanthan gum you can purchase it and use 1/2 to 1 teaspoon per cup of flour. I have found this produces products very similar to gluten containing ones. However, I have not yet made yeast bread (I am the only celiac in the house and I like freshly baked bread…I would probably be wasting a lot of flour if I baked it!!)
Roberta

Q. Dear Roberta, Hi, I was told I now have celiac sprue and must have a Gluten Free Diet. I was wondering, and after reading some online materials, do I have to have the biopsy to confirm this or just stay off of Gluten?

A. The biopsy is still considered the “gold standard” for diagnosing celiac disease. If you go off of gluten before you have the biopsy it may register false negative and it might look like you do not have celiac disease. Then you would never know if you really have it or not. I would ask your doctor to refer you to a gastroenterologist who will look at your blood work and talk to you about scheduling an endoscopy and biopsy to check for celiac. As I said before, if you do have a biopsy scheduled DO NOT go off of gluten beforehand (ask the GI doctor how long you would need to be eating gluten for the test to be reliable).

Roberta

Thanks deeply for this reply. My blood test registered a 61 for gluten allergy, so does this mean I have Celiac Sprue? My Neurologist and I talked about me going off Gluten and he told me, “No, you do not need the biopsy, just try and see and if there is a change, then ya know for real.”

Somehow, I still agree that I need and want the Biopsy to be sure. I see my own MD on August 16, 2006 and will ask him to refer me to my Gastro Doc for the testings that you told me about. I am not off of Gluten as of yet. I will stay as I am until I get this Biopsy one way or the other.

Ya know, I had sudden skin rashes on me in 2004 around my navel area and got soooo sick! I also was having so many dental appointments for infections with all of my skin and bowel changes, so I had no ideas as to what was happening to me.

My MD was neglecting me to the max. I almost stopped walking September 2004. All of the sudden I had 8 bulging discs and one is tearing.

I had no private insurance and my MD would not do anything for me, but told me when I had some insurance, then he would send me to Rehab and they can learn what is wrong with me. Ok, I got private insurance August 2005.

Weird as it was, I went along with Rehab, but also slipped around my MD and made it to the ear, Nose and Throat doctor. He did the MRI of the Brain and referred me to the new Neurologist. I had no MS, No Tumor of the brain, but I was still so sick in the gut, headaches, not walking and all the daily bowel problems.

By June 2006 I had something on my stomach, just above the navel to the left and it was filled with blood, infected and so sore to the touch. At first the doctor told me it was Staph in July 2005 and put me on antibiotics. After some months went by, he saw me again and I told him that sore is so painful, so he told me it is a abcess and that he would cut it out and he did June 2006, but get this, he never cultured it.

He got removed off my case/left the clinic. I complained to the Administrative Board of Northwest Human Services, which they control this clinc and the doctors.

The new doctor saw me 3 times, packing this open wound and he never cultured the bloody packing or anything either!

I had extreme bowel changes, diahrrea, cramping, spams that lead to major watery episodes, some bleeding and I always tear below when I have the extreme bowel changes. The Neurologist that I made it to, started me on B12 Shots & Folic Acid, from January 2006 until now, so he tested me for Gluten Allergy and it showed me as 61, normal being 20.

I saw the Gastro Doc March 2006 and he went up the colon, but all is ok there he told me. He put me on meds for daily maintenance and the other one is for emergency spams. I called him back and reported that I was told that I have Celiac Sprue, but a nurse told me to stop eating Gluten. Nothing else. I do not like that. I will ask my MD to refer me NOW!

I use percacets for my pain. I try to walk at times, but my legs stop working all of the sudden. My skin becomes so tight, pain up to the hips and that is a killer. I can walk longer at times, with the pain cut by the meds. I always have post-trauma with my muscles after walking.

Now this is where I am at and now do I have Gluten Myopathy? That is nerve and muscle damage. Could this have been prevented by my MD?

Hope that this does not bore you.

Bye and thank you for being there for this.

I would recommend the book “Dangerous Grains” by Braly and Hoggan. You will probably recognize yourself in the situations they describe. You are on the right track pursuing the biopsy. That way you know for sure you have celiac disease (the blood test you had could have been a false positive–most likely not, but it’s possible.

Because celiac disease is an autoimmune disease it is related to the other autoimmune diseases out there that have similar symptoms to what you are describing. Don’t give up…the average person goes through 11 years of false diagnosis before finding out they have celiac disease.
Roberta

Q. Dear Roberta,After being ill for several years I was diagnosed with Celiac disease about 3 months ago. I would like to know how careful I have to be in eating and also any helpful hints on how I can lose weight. The doctor believes that I have become weight loss resistant due to the troubles I have had.

A. The answer to your first question is that everyone diagnosed with celiac disease has to be careful with their diet. Even a crouton’s worth of bread is too much!! Read labels carefully. Last night I was looking forward to eating a convenience canned product that I had noted a few days earlier did not contain wheat or any other gluten containing item. When I read the back of another can last night I was surprised to see wheat listed. It turns out that molasses powder, an ingredient listed on both labels, contained wheat in one instance and did not contain wheat in the other. (we had 2 cans from different lots).

As far as weight loss I would recommend the cookbook by Connie Sarros “Wheat Free, Gluten Free, Reduced Calorie Cookbook”. (it is available on line). It is easy when you are starting out to only be concerned about gluten and forget about fat and calories. Watch portion sizes. Hopefully as you follow the diet you will start feeling better and have more energy and may want to become more physically active, which will burn more calories and therefore help with weight loss.

Roberta

Q. Dear Roberta, I am on a gluten free diet, but am new at it and am not sure of all products I need to avoid. Is there gluten in milk since cows eat grains etc. I am not sure of it. I use goat milk on my cereal also drink it. It that harmful to a gluten free diet.

A. The only effect milk can have on someone with celiac disease is that sometimes the flattened villi of the small intestine don’t produce lactase (the enzyme that helps digest the sugar in dairy products). Undigested lactose passes into the large intestine and can cause diarrhea and gas. Once the villi regenerate (due to a gluten free diet) this lactose intolerance usually disappears.

Roberta

Q. Dear Roberta, What should I do when looking for a gluten free salad dressing in stores? Most of the info. I have read says that salad dressings may contain gluten. Are there certain ingredients I should avoid in salad dressings?

A. Your best bet is to try the health food section of your store where they may carry dressings that are specifically gluten free. Annies Salad dressings (www.anniesnaturals.com) carry several dressings that are clearly labeled “Gluten Free”. Dressings that contain soy sauce may contain wheat if the soy sauce contained wheat. Some thickeners may contain wheat or other gluten containing grains. Or, you can mix your own dressing using oil, water, the vinegar of your choice, a little salt and pepper, and whatever other gluten free seasonings you would like.

Roberta

Q. Dear Roberta, My daughter is presently working at a child care unit where one of the children that is going to be starting soon, has Celiac. She would like to know if you have any recipes for a healthy lunch that she could make for all the children and convert it for the child with Celiac – so that she is not made to feel any different. Your help would be appreciated.

A. Something super easy that everyone could enjoy is quesadillas made with soft corn tortillas and any kind of cheese. I usually put grated mild cheddar or monterrey jack in the tortilla, fold it over, and microwave it until I see the cheese is melted (about 30 seconds). You could cut these in quarters for the kids.
Just make sure they are CORN tortillas, not flour ones.

Roberta

Q. Dear Roberta,My name is xxxxx and I am 23 years old and have just received a diagnosis that i have celiac disease. However they believe that i have suffered from celiac disease for many years. My main concern is my stomach and intestines. I stay away from gluten totally and milk as well. However i still have extreme pain in my lower stomach and extreme bloating. Should i be following a certain diet of basic food now, and slowly introduce other foods? is there anything i can do to relieve the bloating? sometimes is so awful i can’t even fit into my clothes.
Another thing how can i NOT put on weight?!

A. Many times celiac disease leads to lactose intolerance because your villi are not functioning to digest lactose, the sugar in milk, with the enzyme lactase. If you have been on a gluten free diet only a short time it is possible this is the case. If you are eating milk products I would suggest Lactaid (available as milk, pills, or drops over the counter). Another possibility is that your celiac has led to inflammation in your colon which can be treated by your physician. I would make another appointment with your gastroenterologist to explore this possibility and others that could be causing your problems.
As far as gaining weight, make sure to watch portion sizes. Don’t cut out any particular foods, just try to eat smaller amounts and if your health permits and it is ok with your physician, try to gradually increase your physical activity. Believe me, I know what you are going through. I have been trying lots of yummy gluten free foods lately that unfortunately aren’t calorie free and it has consequences.

Roberta

Q. Dear Roberta, Hello, I thought I’ve seen that Vanilla Extract, being made with grain alcohol was a no-no, but have seen vanilla listed in several recipes. Please advise. Thank you.

A. The amount of gluten in the small amount of vanilla extract that would go into a recipe is negligible–so don’t worry about it.
Roberta

Q. Dear Roberta, I was just diagnosed with Celiac and have been a shopping fool looking for products that are gluten free. I’ve been lucky & found a great health food store that carries a good variety.
I still have lots of questions regarding certain ingredients and allowable foods such as:
Is butter ok?
Soy flour is ok but not soy sauce?
What does xanthum gum do as an ingredient – is it necessary?
Is Canola oil the only oil to use?
I’d appreciate your help with these questions. Thank you.

A. Is butter ok? Yes in that it does not contain gluten, but soft margarine in a tub has less saturated fat (look for one that is trans fat free). Avoid stick margarine.

Soy flour is ok but not soy sauce? It is not the soy that is forbidden but the wheat that is in some soy sauce. There are brands without wheat (check the label).

What does xanthum gum do as an ingredient – is it necessary? Xanthan gum helps baked goods hold together. I have found it to be useful in baking but it is not essential. Tom Sawyer Gluten Free Flour (my favoritet) already contains xanthan gum.

Is Canola oil the only oil to use? If you are looking for an oil that is trans fat free and saturated fat free canola and olive oil are the best choices.

Roberta

Q. Dear Roberta, Last year I became really sick. I had many tests done, including endoscopy, stigmoidoscopy, and many others. Everything came back negative, including the biopsy from endoscopy, which is suppose to confirm you have a gluten intolerance. The only test which resulted positive was an old school blood test, which per the GI Dr. could be a false positive. However, I was told to try the gluten-free diet. I started August 23, 2005. After about 1 month I finally started feeling better and stopped getting ill. But, the Dr. may or may not be convinced this is what it is. He said it could be an allergy to one. By the way, I have also been avoiding dairy. Do you know of anybody, that if I can obtain all my test results, that I could send them to for a second opinion? I am only 35, and I am trying to be positive that it could just be an allergy to one or even lactose intolerance. However, I have a phobia in trying any of the foods. I am afraid to get sick again. So if you know of someone, anyone that can take a look at my test results without me having to try the foods or milk and become ill that can actually diagnose please help me with this.

A. I would guess that any reputable physician would want to examine you and possibly run his/her own blood tests and endoscopy on you to make a diagnosis rather than rely on someone else’s tests.
That said, yes, you would have to go back on gluten. So my question is…if gluten bothers you, does it really matter whether you are truly celiac or whether it is a gluten intolerance?
If not, just keep avoiding gluten and don’t worry about giving your condition the right name.

It is common to have a lactose intolerance along with celiac as the enzyme lactase is produced by the tips of your villi, and in celiac the villi are blunted, so there will be a blunted lactase response causing malabsorption of dairy products. Try something like Lactaid which contains lactase to see if it helps with that.
Roberta