dlp252

I don't know a definitive answer, but I can say that the best I've felt in the last 4 years were the two times I ate only whole unprocessed foods, with no wheat or barley at all and very little grains overall (didn't even know I was Celiac).

I agree, don't give up. Give this a while to really work. I've tried a lot of things in the last 4 years to try to get to the bottom of why I don't feel well...I've tried low carb diets, detox diets, allergy shots, etc. The one thing that all of those things have in common is that it takes a while before you feel the good effects. Almost all of them say you will sometimes feel worse before you feel better, and in some ways that makes a lot of sense. Our bodies are trying to heal themselves and in the process are getting rid of a lot of junk...please don't give up!

That is WONDERFUL!!! What a great Christmas present!

I think I've had it a while...when I was a baby wheat gave me eczema. Mom said I outgrew that, and in fact was eating pasta and other wheat products as a child. I have had digestive problems all my life, but that was about it. I started having much more trouble after my father died in 1996, but the major problems started around the time I had major surgery in 2001. I'd never had allergies or respiratory problems before those two events...after my father's death I had several rounds of bronchitis, then after the surgery I suddenly got major allergies with constant/chronic sinus infection and major digestive problems. I didn't start really trying to find out WHY I was sick all the time until about 4 years ago. I've had many of the symptoms on the "list" of symptoms at one time or another in my life though.

Hi Adam, welcome!

I'll do today-it's better than what I had yesterday, lol:

B: Apple with hazelnut butter, glass of soymilk

L/S: Boneless/skinless Chicken thighs with peas (I bring enough to have for lunch and snack at work)

D: Hum, forgot to take something out--will probably have Tinkyada spaghetti with meat sauce

S: Protein smoothie made with rice milk, frozen cherries, chocolate rice protein powder and a touch of hazelnut butter

I've found comfort in a baked potato a few times in the last few weeks, lol.

I think tropical source makes gluten and dairy free dark chocolate - yum

Oooh, I think I've seen these at Whole Foods! :D

I was also being 'filmed for training purposes' so hope that in my small way I will help to educate a newbie doctor not to dismiss dietary illness or make waste basket diagnosis.

Even better!!!!

Donna, that is fantastic! Congratulations on finding a doctor who is willing to listen. I went to a new ENT a few weeks ago, who was also willing to listen and it felt great! I hadn't had my testing done yet, but will show it to her next time I see her.

Yes, me, lol. I was just diagnosed by Enterolab--about the same as you. I have the main gene for Celiac, and I'm definitely sensitive to gluten as well as casein. My first thought was OMGosh how will I ever do this, but actually it hasn't been that hard. I do miss some things, but there are some chocolates which don't contain milk products (mostly dark chocolate and mostly in health food type stores which tend to carry a few things without main allergins). The thing I miss the most is my BUTTER, lol. I used it on everything. I found some Health Balance margerine in Whole Foods Market which does not contain casein or transfats, etc. It's not bad...it does contain soy though. Most of the foods I've been enjoying are okay. I also found some cookies and bars at a local health food store which are very tasty and don't contain dairy or gluten (I'll have to go home and look to get the brand and name correct though). Look for a thread I started, I think in the "Products" section in which I asked for everyone's top 5 gluten/casein free foods. There are some great suggestions for some of the things you are missing.

Here is a link to the thread I mentioned:

Open Original Shared Link

Well, I can offer an opinion on the allergist. Almost 4 years ago I went to an allergist/ENT to see if HE could figure out why I was sick all the time. He tested me for 30 some allergens and turns out I was allergic to almost all of them. He put me on allergy shots twice a week, which I ended up staying on until just a couple of months ago. Sometime during that first year I also went to be tested for food allergens...turns out I was only mildly reactive to 4 foods (oddly, I rarely eat any of them except barley which as we now know is in almost everything). During this 4 years my symptoms have not eased up at all (except for the two short periods where I was eating mostly meat, vegetables and a little fruit). I retested a couple of months ago and am now only allergic to 5 things, so theorectically I should show improvement in my symptoms. I have not been retested for food allergens though.

My doctor was wonderful and was willing to explore different theories such as Candida Albicans, low thyroid, etc. to explain some of my symptoms, but none of which helped--he retired in June, or I bet I could have talked him into doing the bloodwork for Celiac...although not sure it would have showed much in the traditional tests because I had been low carb for so long.

So, I don't think I have a point to all that except that in the end, the allergies weren't the cause of my sickness...

Sorry that was so long...and, probably not much help, lol.

I found this link that describes what it is...:

Open Original Shared Link

Lactate is on the list of items that may have hidden casein/dairy that I copied from somewhere. I'm not sure if Sodium Lactate is different or just another form of it.

Gosh that stinks! I usually take stuff like that to work and leave it on the counter for people to take. I've also been known to throw things away--just had to do that yesterday. A friend gave me a cute little M&M guy with M&Ms...I had to throw out the M&Ms because I also am casein intolerant. I am keeping the cute little guy though.

I too am sorry you are feeling so bad. I really feel for you! I had a similar situation at the beginning of October: strep throat, which turned into an ear infection, which turned into a sinus infection, which led me to a cold. I was sick for a solid month and a half to two months. I also received more antibiotics. I echo the advice to take a probiotic...I've been on so many antibiotics in the last 4 years that I always take a probiotic now, even when feeling reasonably good.

Congratulations?! LOL, not sure whether THAT is appropriate, but at least now you have the official diagnosis. (I'm a bad patient as well...I intend to tell them stuff, but usually forget.)

I'm so sorry you are feeling so bad. I'm afraid I'm so new to all this myself that I don't have any advice, just wanted to tell you how sorry I am. I've had the burning on the arms before, but never knew what it was, and in fact was going to ask that question here myself. In my case, though, it's more like a bad sunburn except that there is no redness whatsoever, no marks, no bumps, not outward indication at all...sounds a bit different than yours. When my arms get like that, it actually hurts to have my clothing touch them. The only thing I can think of that might have been "off" is the ham. Sometimes they use "carmel coloring" or wheat in the glaze. I hope you feel better soon...you've had such a rough time.

Rachel, this doctor sounds wonderful! I don't know the answer to the infections questions, but it does seem to make sense that there would be other things going on.

I too am so sorry this had to happen. I don't suppose I'll ever really understand it. I really does sound like mob mentality took over.

This morning so far I've had: apple with hazelnut butter; homemade hot chocolate with unsweetened cocoa, hazelnut milk and a little agave nectar.

For lunch I plan to have: Tinkyada penne with a meat sauce made with very lean ground beef and crushed tomatoes.

For dinner I plan to have more ground beef, some brown rice and a veggie (not sure which yet).

Snacks: Think Organic bar, banana, rice chips.

It's an odd day, and I'll have to leave my house at 4:00, so will be eating all the above early (except the snacks)...I may also grab something out, but what will depend on where I am, lol.

Just curious...which of the Enterolab tests did you get, and how long to get your results?

Also...I find it a bit disappointing that they would send out these results without a "layman's" translation of what it all means!

I had the "Gluten Sensitivity Stool and Gene Panel Complete Plus Free Milk Sensitivity Stool Test" and I also ordered the yeast and egg panel. Those tests covered just about all of what I wanted tested...the only other thing I wish I had tested was soy. I sent the tests in the Wednesday after Thanksgiving (Nov 30), and received them on Monday, Dec. 12, so a little less than two weeks. The good news, I guess, is that I can eat eggs and yeast, lol.

Most of the results were fairly easily understood, I just can't wrap my mind around the gene thing. I did leave out some of the information...here's the full explanation:

Analysis of this stool sample indicates you have dietary gluten

sensitivity. For optimal health and prevention of small intestinal damage,

osteoporosis, damage to other tissues (like nerves, joints, pancreas, skin,

liver, among others), and malnutrition, recommend a strict gluten free

diet. If you are experiencing any symptoms, these may resolve following a

gluten free diet. As gluten sensitivity is a genetic syndrome, you may

want to have your relatives screened as well.

HLA gene analysis reveals that you have a genotype containing the main gene

that predisposes to gluten sensitivity and celiac sprue: HLA-DQB1*0201

(HLA-DQ2) and/or HLA-DQB1*0302 (HLA-DQ8).

Interpretation of Fecal IgA to Gliadin and Other Food Antigens: Levels of

fecal IgA antibody to a food antigen greater than or equal to 10 are

indicative of an immune reaction, and hence immunologic "sensitivity" to

that food. For any elevated fecal antibody level, it is recommended to

remove that food from your diet.

Values less than 10 indicate there currently is minimal or no reaction to

that food and hence, no evidence of food sensitivity to that specific food.

However, because 1 in 500 people cannot make IgA at all, and rarely, some

people can still have clinically significant reactions to a food antigen

despite the lack of a significant intestinal antibody reaction (because the

reactions primarily involve T cells), if you have an immune syndrome or

symptoms associated with food sensitivity, it is recommended that you try a

strict removal of suspect foods from your diet for 6-12 months despite a

negative test.

The numeric value of an antibody is not a measure of clinical

severity. Values of 10 Units can be associated with the same reactions as

the maximum values we measure (200-300). Most positive reactions are

between 20 and 80 Units. An analogy would be trying to use the level of

antibodies to penicillin in a person who has had an allergic reaction to

penicillin to determine if it would be safe for them to take penicillin

again. This obviously is not done because those with demonstrated

penicillin allergy could not take penicillin without the risk of suffering

severe health consequences. Although gluten sensitivity is not a true

allergy like penicillin allergy, the concept is the same.

Interpretation of Fecal IgA to the Human Enzyme Tissue Transglutaminase:

Values greater than or equal to 10 Units indicate that the immune reaction

to gliadin has resulted in an autoimmune reaction to the human enzyme

tissue transglutaminase. It is this autoantibody that may be responsible

for the many autoimmune diseases associated with gluten sensitivity.

Interpretation of Quantitative Fecal Fat Microscopy: A fecal fat score

less than 300 indicates there is no malabsorbed dietary fat in stool

indicating that digestion and absorption of nutrients is normal.

A fecal fat score greater than 300 Units indicates there is an increased

amount of dietary fat in the stool which usually is due to gluten-induced

small intestinal malabsorption/damage when associated with gluten

sensitivity. Values between 300-600 Units are mild elevations, 600-1000

Units moderate elevations, and values greater than 1000 Units are

severe. Any elevated fecal fat value should be rechecked in one year to

ensure that it does not persist because chronic fat malabsorption is

associated with osteoporosis among other nutritional deficiency syndromes.

Possible causes of elevated fecal fat scores besides gluten-induced damage

to the intestine include:

* Another inflammatory bowel disease (such as Crohn's disease which is

associated with gluten sensitivity)

* Deficiency in the production or secretion of pancreatic enzymes or bile salts

* Overgrowth of bacteria in the small intestine

* Diarrhea itself causing the fat to rush through the intestine unabsorbed

* Consuming very large amounts of dietary fat, eating unabsorbable

synthetic dietary fat substitutes or taking "fat blockers"

* Resection of the small intestine causing "short bowel syndrome"

Interpretation Of HLA-DQ Testing by Molecular Analysis and Conversion to

"Serologic Equivalent": Today HLA-DQ gene testing is done by analyzing DNA

using molecular techniques. In the past, the methods were done by analyzing

blood cells for the antigens produced by the genes, and these past methods

were responsible for the most commonly known nomenclature for HLA-DQ genes

even today (using integers such as "DQ2"). These are called "serologic

equivalents" to the specifically analyzed gene material. The serologic

equivalents are as follows:

* If the first two numbers of the molecular type are 05, the serologic

equivalent is DQ1 subtype DQ5

* If the first two numbers of the molecular type are 06, the serologic

equivalent is DQ1 subtype DQ6

* If the molecular type is 0201, the serologic equivalent is DQ2 * If the

molecular type is 0301, the serologic equivalent is DQ3 subtype DQ7

* If the molecular type is 0302, the serologic equivalent is DQ3 subtype DQ8

* If the molecular type is 0303, the serologic equivalent is DQ3 subtype DQ9

* If the first two numbers of the molecular type are 03 but it is not 0301,

0302, or 0303, the serologic equivalent is DQ3

* If the first two numbers of the molecular type are 04, the serologic

equivalent is DQ4

The gluten sensitive, celiac genes are HLA-DQB1*0201 and HLA-DQB1*0302

(HLA-DQ2 and HLA-DQ8, respectively).

The other gluten sensitive genes are any molecular type involving another

HLA-DQB1*03 number (i.e., HLA-DQ3), or any HLA-DQB1*05 number, or any

HLA-DQB1*06 number (i.e., HLA-DQ1)

If you have one gluten sensitive gene, then your offspring have a 50%

chance of receiving the gene from you, and at least one of your parents

passed it to you. Having two copies of a gluten sensitive or celiac gene,

means that each of your parents, and all of your children (if you have

them) will possess at least one copy of the gene. Two copies also means

there is an even stronger predisposition to gluten sensitivity than having

one gene and the resultant immunologic gluten sensitivity or celiac disease

may be more severe.

For more information about result interpretation, please see

Open Original Shared Link

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis (if ordered) performed by: Laboratories at Bonfils

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

Thank you all again! This is a great list!

Thanks for the link! I'm going to check out a health food store near me that supposedly has a great selection of gluten-free products, if I don't see anything there I'll order off the link you provided! Thanks again.

Thank you Gina! Phew, I'll have a great list when I go shopping this week!