Lesliean

Chrissy, sorry I was unclear about minimal villi flattening and negative blood work. Many 'healthy' people are picked up by positve blood work but don't have a positive biopsy. In the past they would have been told to eat wheat. That they don't have celiac disease.

But there are also people who have autoimmune diseases, little or no villi flattening, and negative blood work. I just want people like me who have negative blood work to be considered for gluten intolerance and not told they do not have it.

Leslie

In a perfect world the test would be definitive for the disease but the blood tests for celiac disease are not 100% specific nor sensitive.

  Quote

� % of Sensitivity % of Specificity Predictive Value % Pos Predictive Value % Neg

EMA 97% 98% 97% 98%

ARA 65% 100% 100% 72%

IgG AGA 88% 92% 88% 92%

IgA AGA 52% 94% 87% 74%

Ema has a high sensitivity and specificity (according to the article posted at facs at this website) because it correlates to total villi atrophy. Anyone with a negative biopsy is considered negative for celiac disease. That still leaves undiagnosed ALL the people who have other organs targeted by gluten.

What you must grasp is that people with minimal villi damage (undetected by biopsy) sometimes have negative blood work and yet have systemic autoimmune syndrome. These people will have diabetes, neuropathy, thyroiditis... (over 200 disease processes) and yet untill they pass a threshold of illness they might test negative by blood test. The danger is that the damage is often irreversable.

So yes, your test is so great for detecting complete villi damage but will often not catch early celiac disease or a lot of the gluten intolerance where there are other targeted organs. Transglutaminase only becomes positive when the villi are completely damaged. Doctors love this test because it correlates to a positive biopsy but its like using the damage from a heart attack to diagnose heart disease. Too late.

That is why many of us support a gluten free trial in people who test negative on the above tests. And why so many of us support Dr. Fine. Please understand, people are testing negative, being told they are not celiac and dying of gluten intolerance. I sympathize with your mom's experience with a gluten free trial but there is no easy test for this condition and more people are being harmed by not taking a gluten free trial or doing Enterolab testing.

Like me they might test negative and be told they do not have celiac disease even though they remain quite ill and untreated. I did not listen to my doctors who said I was negative for celiac disease and within 6 months of giving up gluten was completely off Prevacid (2 years) with no reflux, off all asthma medicine and asthma gone (7 years and as much as 1780mg Flovent a day), heart beat regular, cough and voice loss gone, hypoglycemia gone, digestive problems gone (I had thought they were normal)... (too many symptoms to list all). And please don't say that patients should just ask for the full panel. Most people don't have a grasp of the information. With gluten intolerance, most doctors don't have a grasp of the disease and its many manifestations.

My doctor is frustrated that so many patients like me test negative. I am hoping to get him on the gluten free trial bandwagon becuase his instincts are correct and these people probably do have gluten intolerance. They just don't have complete villi damage.

I need more time to read the complete postings but now that I read your story I realize where you are coming from. But really, don't you see more doctors tell patients their problems are in their minds then telling them they don't have the answer yet? My doctors told me; "Maybe you are just getting older", "You have allergies and will have to take care of them yourself", "I don't know what a specialist would do that I haven't done". Meanwhile my peak flow was 60% of what it is today.

Why do you say the 5% of depressed patients that do not resolve with medication have physical conditions causing the depression when the other 95% who respond to treatment could also have an underlying physical condition resulting in depression (ie-gluten intolerance)? That seems to be an American 'treat the symptoms' logic. Treat the whole patient. Look for patterns. Look for underlying causes.

Leslie

I have an e-mail in to Cara. I'll post her response if I get one. Maybe she will know something. So many of us use more than one website and gravitate to one or the other for different things. I always refer to celiac.com for banned ingredient lists but use braintalk for recipes... The message board is just a personal preference. Thank God both are available to us. We need all the help we can get. John Lester did say he was traveling and down for a while only and doing repair and upgrades. Maybe it is a time consuming process. Especially if it requires parts.

Good to see you Claire! We are old friends. I hope all is well with you.

I hope all the people just working through their diagnosises and treatment find their way to websites and people who can guide them. We all probably have stories to tell about being sick and not knowing where to turn for help.

Leslie

I think of hastypastry.com or braintalk as the other website with a great message board. Similar to here with a huge research collection to peruse.

Since they went down a month ago there has not been a single update on the status of their upgrades and repair. That is a bit disconcerning. Does anyone know the status of hastypastry.com? When they will be back? I hope they kept their permanent file information that included everything from doctor abstracts and articles to recipes.

Is there anyone out there from braintalk who has information?

Leslie

Does anyone know the status of hastypastry.com? Its been down now for a month tomorrow and there have been no updates.

Leslie

I started with Bette Hagman's recipes but then made it a more fiber rich and complete protein by changing it a bit. I also like it much better than the bland potato starch/tapioca starch heavy processed breads I've tried. I use 1/3 each corn, garbonzo, and tapioca flour in everything from breads to cakes. and 2 cups of this mix with 2 cups of corn meal for cornbread.

Leslie

I'm a month behind your post, celiac3270, but can I get a copy too? Please?

jlanders@alaska.net

Yea! Thank you Laurie. I bought some Bob's Red Mill Buck wheat today.

Been pouring through the Mountain House ingredients and it doesn't look good for gluten-free camping. Anyone know of a freeze dried dinner and breakfast pack company? My husband is taking my diagnosed daughter on their third annual rafting trip in the ANWR preserve in Alaska and room is of the essense. I can pack gluten-free for the trips we take, but for my husband it needs to be open the bag and pour in the water. That's all he can handle.

Thanks

I haven't been diagnosed but noticed severe eye dryness and vaginal dryness (as well as yeast infections) went away as if by magic when I went gluten-free. I hope you get relief soon.

My presenting symptom was reflux and after 2 years of Pepacid I diagnosed thru Enterolab and the reflux went away within weeks of being gluten and dairy free. Also a congestion in throat and nose and ears went away. Only then did I realize all the gastro problems had not been normal. As well as irregular periods, heart rate...

I'm hooked on the Spice Hunter's spices. Does anyone else use them and are they ok? I called them and they said they don't add gluten but don't keep a gluten free plant.

Is Kraft bar b que sauce gluten free? I could never find out and you would make my recently diagnosed daughter very happy if you say yes.

Is buckwheat ok for us to eat in America? I see Bob's Red Mill buckwheat when I shop and have been tempted but not till you tell me it's ok.

I'm vegan in addition to gluten free. Here is a great link to great recipes:

Open Original Shared Link

And here is the link to all the recipes:

Beverages - Awesome Ones for All Seasons

Open Original Shared Link

Bread, Muffin, Cracker, Crust & Crumble Recipes

Open Original Shared Link

Brunch and Breakfast Ideas

Open Original Shared Link

Chinese/Thai Food

Open Original Shared Link

Cookie & Cake Recipes

Open Original Shared Link

Dairy Free Recipes

Open Original Shared Link

Dairy Free gluten-free Cake Icing Recipes? Birthday Party HELP!

Open Original Shared Link

Dinner

Open Original Shared Link

Dinner Ideas

Open Original Shared Link

Egg Free Baking

Open Original Shared Link

Fish Dishes

Open Original Shared Link

Freezer Meals

Open Original Shared Link

Mexican Meals

Open Original Shared Link

Noodle Recipes

Open Original Shared Link

Nut recipes

Open Original Shared Link

Pizza

Open Original Shared Link

Pizza Dough discussion Open Original Shared Link

Pot Luck Dinner Ideas and Discussion

Open Original Shared Link

Puddings, Pie Shells and Puff Pastry

Open Original Shared Link

Sauces and Seasonings and Salsas

Open Original Shared Link

Seafood Fare

Open Original Shared Link

Snacks/Travel

Open Original Shared Link

Stirfry sauces

Open Original Shared Link

Sugar (refined) Free Recipes

Open Original Shared Link

Thanksgiving Recipes & Ideas

Open Original Shared Link

Vegan/Vegetarian Recipes

Open Original Shared Link

Yeast Free Recipes

Open Original Shared Link

__________________

I hope you enjoy them as much as I do

Kaiti,

When people ask for what tests to be done I always wait for your answer. You put a great panel of tests up with clear guidance. The study link for my first post was on the post and here is the header to it that I did leave off: Rom J Gastroenterol. 2003 Jun;12(2):101-6. I brought this abstract in to show my specialist and he was very impressed by it.

Autoantibodies and histogenesis of celiac disease.

Rostami K, Mulder CJ, Stapel S, von Blomberg BM, Kerckhaert J, Meijer JW, Pena SA, Heymans HS.

Department of Gastroenterology Withybush General Hospital, Pembrokeshire, Haverfordwest, UK. krostami@hotmail.com. (see weblink in above posting)

In America we miss diagnosing most celiacs (studies show 1/133). I agree that the tTga is the best test currently to specifically diagnose celiac disease, but this study (as well as a few more recent ones I have read recently) are finding a coorelation between tTga's being positive and the amount of villi damage. They conclude the moderate and mild early cases will be missed (till later) and they recommend keeping AGA and AGG to help pick up those cases.

I like to see blood work used without biopsy. I just recommend a complete panel including tTga and AGA and AGG. This seems in line with your recommendations to people who write in.

I hear what you are saying. But these aren't articles on the web. They are abstracts from medical peer reviewed studies. My vote is for several tests to be done at one time and to not rely on one or two tests.

tTga misses up to 70% of celiacs so the anti-gliadin tests are very important. I am a lot less concerned about the relatively low sensitivity (being positive when you don't have it) than I am with a low sensitivity (being told you don't have it when you do) of the individual tests. The problem, as I see it, is that untill you have an advanced case with moderate to severe intestinal damage you may not show up positive on any one test. By that time you will no doubt have all sorts of medical problems and some of them are likely to not be reversable.

Autoantibodies and histogenesis of celiac disease.

OBJECTIVE: Autoantibodies are used as markers for celiac disease (celiac disease) identifying patients with mucosal lesions. The purpose of this study was to evaluate the sensitivity and role of the autoantibodies such as IgA antiendomysium (EMA), IgA antigliadin (AGA) and the IgA antitissue transglutaminase (tTGA) in histogenesis of celiac disease. METHODS: Seventy-nine cases including 30 untreated celiacs, 5 celiacs on gluten-free diet (GFD), 41 first degree relatives and 3 non-relatives suspected for celiac disease were investigated. Three untreated celiacs with IgA deficiency were excluded from this study group. IgA antibodies to tTGA were determined by ELISA, as described before. Twelve of 41 relatives and 2 cases of non relatives suspected with positive serology underwent a small intestinal biopsy. Results were correlated with the degrees of abnormality of the intestinal mucosa in patients with celiac disease. Intestinal biopsies obtained from study population were evaluated for histological quantification. RESULTS: Celiacs and suspected cases with positive EMA/AGA and or tTGA showed shorter villi (p < 0.007) and/or a higher number of intraepithelial lymphocytes (IEL) (p < 0.035). The sensitivity of serology (EMA, AGA, tTGA) in patients with Marsh IIIc was 100%. However, in patients with Marsh IIIa the sensitivity for EMA, AGA, and tTGA was 40%, 50% and 20% respectively. CONCLUSIONS: The appearance of antibodies is related to the degree of mucosal infiltration by IELs. Although tTGA, like EMA provide a highly sensitive parameter for the detection of celiacs with severe mucosal damage, it appears to be less sensitive (even less than AGA) in celiac patients with milder histopathological abnormalities. However, it should be recognized that the substantial part of the celiac population present with these milder forms of mucosal abnormalities. Using tTGA as a single test in screening may result in missing up to 60-70% of celiacs with mild mucosal abnormalities. Combination with other screening tests (at least with AGA) is essential and strongly recommended.

Open Original Shared Link

I found a great corn bread recipe in Joy of Cooking and just subbed Bob's Red Mill All Purpose Flour for the wheat flour in the recipe:

Preheat to 425

3/4 cup gluten-free flour

2 1/2 tsp baking powder

2 tbsp sugar

3/4 tsp salt

1 1/4 cup cornmeal

1 egg

2 tsp oil

1 cup milk or soy milk

Mix wet and dry separately and then mix together. Put in pan, or muffin tins, or other trays and cook for 20-25 minutes.

Thank you dperk for your complete discussion of nutritional yeast. I bet some people love it and some can't tolerate it.

It's always great to hear your thoughts Marianne. I am trying to research soy. The website I linked to talked about different estrogen receptors and how the estorgen like substance in soy is different and beneficial compared to hormonal estrogen. But I am eager for your thoughts and anyone elses and to do more reading as I do not know enought. Doctors limit soy in women with breast cancer that grows faster in response to estrogen. And modified corn grains have been linked to organ defects in rats. I'm all for rice and veggies. Never heard anyone say they weren't ok.

It also seems many people with gluten sensitivity often have sensitivities to other grains. I just hate to see all grains (and bean)avoided as they are such an important source of fiber, vitamins, minerals, and energy. Maybe if we trust our reactions to food we all will find the foods that work best for our own bodies.

Marianne- I read recently that soy and rice drinks can be made from barley enzymes. Can this be a problem? Is it listed on the label?

Also I thought everyone might like these articles on dairy intolerance. The first article tests the incidence of lactose intolerance in those with Celiac and the second the recovery % of lactose intolerance in Celiacs who are gluten free. Enjoy!

Open Original Shared Link

Open Original Shared Link

Thank you,

Leslie

I don't think soy is a bad food for anyone (unless you are allergic) , at any age. Asian people eat up to 100 times as much soy as Americans and have fewer health problems across the board. The incidence of breast cancer in China and Japan is much lower because of the amount of soy they eat. See: Open Original Shared Link

(I prefer the google.scholar professional sites to Mercola.)

I substitute a mix of almonds, nutritional yeast, and arrowroot (cornstarch will work as well) for cheese to make a cheesy dip.

1/4cup almonds

1/4cup nutritional yeast

1/8cup arrowroot

1/2tsp garlic powder

1tsp onion powder

1tsp salt

2cups water

Blend completely till liquid and cook while stirring over medium heat in a saucepan till thick.

Welcome to the boards and I am so sorry for what you are going through. You certainly sound like something is going on with food sensitivities that may include Celiac disease. Celiac disease has many symptoms but often includes problems with the gut like diarhea, constipation, gas, pain...

Doctors can do blood tests for Celiac disease and with all the problems you are having I would think they would be willing to. This article talks about the disease symptoms and blood tests:

Open Original Shared Link

Here is the fact page for celiac.com with answers to common questions:

https://www.celiac.com/st_main.html?p_catid...-27105127989.a5

I really wish you good luck and keep writing to let us know how you are and how we can help.

Leslie

When a blood test, especially EMA or tTG comes back positive I think you can conclude the diagnosis is positive for Celiac disease. The biopsy is no longer always recommended as some doctors think it is like waiting for the heart attack to verify the EKG test that measured heart irregularities. The tTG test already shows a reaction to gluten.

Here is a website to look at: Open Original Shared Link

Here is another concerning biopsy reliability.

https://www.celiac.com/st_prod.html?p_prodid=25

Good luck and best wishes for your daughter's good health.

Leslie

Glad the calcium helps with the cramps. Muscle cramps can also be caused by potassium deficiency. The villi tips that are damaged by celiac disease are where calcium is metabolized. 50 to 100 % of celiac disease patients have significant bone loss (which they regain, in part at least, quickly as they heal). I take Citracil because it can be metabolized on an empty or full stomach. I take 2000 mg. a day. Space them out because only 500mg. can be utilized at a time.

The bowel habits can take quite a while to change to reliably normal. Upwards of a year in many people. I was improved immediately but 4 months into a gluten-free lifestyle and I am still improving with some of the symptoms.

My neck pain, back pain at a fracture site, and elbow pain have gone away completely. Different than yours...

Leslie

I love your answer Judy. You explain so clearly the difference between celiac and gluten sensitive and how we all need to be gluten free.

Enterolab feels you well get an accurate testing up to 2 year gluten free as fecal samples are more sensitive to the tests. One year seems a long time and you might be negative and need to retest on gluten but at least you don't eat gluten for the testing the first time. The gene panel is good for testing of the gluten genes including the new ones that the blood tests don't even test for. My insurance company paid the whole bill and did not require a referral as Dr. Fine is a qualified specialist.

Leslie

Tori-

Fatigue, irritability, mood swings, depression are certainly symptoms of Celiacs. I would imagine intense angry feelings can be too. Hope you root out the causes of your health problems. Mine certainly turned around for the better with a gluten free and lactose free diet. I too had problems with dairy all my life. Temporary damage to the intestines from gluten (till you are gluten-free) can also make the breaking down of dairy a problem.