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Are There Any Blood Tests If I'm Already gluten-free?
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Hi I'm new to this forum and would appreciate any advice. I've been Gluten Free for 3 years but REALLY want testing done to see if I'm Celiac or just Gluten Intolerant. I know for sure I have to eat Gluten free as I get EXTREMELY sick when I eat it. I've never been able to get tested because I've heard you have to be consuming Gluten for at least 2 weeks for the tests to be accurate. My problem is I throw it up when I consume any amount and get all the other symptoms that go along with it! I would like to know if my genes are prone to Celiac to know if I need to watch for any other autoimmune diseases? It would also be nice to know since I have an identical twin sister who has all the symptoms as well. My other question is what tests can my doc perform to see if I have a malabsorption problem? If anybody can tell me ANY tests I can get done to check my vitamin and mineral deficiencies because I KNOW I'm deficient in something! I'm currently on disability for my illnesses. I'm desperately seeking any help!!! :( My main concern is I'm SOOO Fatigued I'm on 80mg of extended release Adderral a day just to stay awake and I'm to the point where that doesn't even work anymore. I'm only 24!! I'm at a loss on what to do! My doctors seem to not take me serious what so ever and I'm suffering depression and Bipolar as well as Extreme Anxiety with a lot of other problems! I feel helpless and just want answers! :( I also think I have Many more food intolerance's but don't know exactly how to go about figuring those out either....I would love any feed back as I feel my body is shutting down....

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Hi there.

Have they given your thyroid a good going-over? That can contribute greatly to fatigue, depression, and anxiety.

The only panic attacks I ever had in my life were when my thyroid was crashing.

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You can't be tested for celiac without eating a fair amount of gluten, which doesn't sound like a good idea. Two weeks is not even long enough. Chicago Celiac Center tells people to challenge for three months, other clinics say two. The genetic tests are not terribly useful as far as telling apart celiac vs. gluten intolerance since you can be gluten intolerant with DQ2 and celiac without the so-called celiac genes.

As Beachbirdie says, you need thyroid testing. Probably also iron, B12, vitamin D, and a lot of naturopaths are starting to look at zinc deficiency as a problem for some people. You probably also need to be tested for lyme disease, mono, and other common causes of chronic fatigue.

You might consider an elimination diet for a couple weeks. Lamb (or turkey if you can't afford lamb and don't eat turkey often), rice, and pears is a pretty classic allergy elimination. If you feel better eating only a few foods that don't tend to cause people problems you know there is a food intolerance involved.

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Hi there.

Have they given your thyroid a good going-over? That can contribute greatly to fatigue, depression, and anxiety.

The only panic attacks I ever had in my life were when my thyroid was crashing.

Thanks for your response. :) I'm not quite sure what you mean by giving my thyroid a good going over? I have my test results in front of me and it says my TSH results that I had done in January is 0.88 mIU/L and I'm assuming the other number 0.34-5.60 is the normal range. I'm not sure what this exactly means as the docs say my thyroid is fine. Are there more tests I should ask for? All your help is very much appreciated! :)

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Have you checked to make sure all the meds you are on are gluten free? Many times the script bottle will have the maker on it and a quick search using their name and the words contact info should get you a phone number.

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You can't be tested for celiac without eating a fair amount of gluten, which doesn't sound like a good idea. Two weeks is not even long enough. Chicago Celiac Center tells people to challenge for three months, other clinics say two. The genetic tests are not terribly useful as far as telling apart celiac vs. gluten intolerance since you can be gluten intolerant with DQ2 and celiac without the so-called celiac genes.

As Beachbirdie says, you need thyroid testing. Probably also iron, B12, vitamin D, and a lot of naturopaths are starting to look at zinc deficiency as a problem for some people. You probably also need to be tested for lyme disease, mono, and other common causes of chronic fatigue.

You might consider an elimination diet for a couple weeks. Lamb (or turkey if you can't afford lamb and don't eat turkey often), rice, and pears is a pretty classic allergy elimination. If you feel better eating only a few foods that don't tend to cause people problems you know there is a food intolerance involved.

Thank you Skylark for your response again I can use any advice. :) I've been reading a lot of your posts on here and am intrigued by your knowledge! :) I just had blood work done again and the docs say everything looks normal...my question is, what's normal?? Does it vary from person to person? What if my normal is different than what the docs say is the "normal range"?? Is this possible? My chiropractor gave me a Health Appraisal Questionnaire from Metagenics called MET423. Are you familiar with this company at all? My results were off the charts! It says I'm in the "High Priority" in almost every category of the body...My point is the doctors all say I'm in perfect health by all my lab work but I KNOW there's something going on with my body I just don't know exactly where to start to figure it out??...

I have done a lot of researching about elimination diets...I just don't know which one to go by! How do you pick one? I'm leaning towards the SCD diet at the moment...although I am concerned with basically everything I eat..My biggest thing is I TRULY believe I have Leaky Gut and Systemic Candidiasis....

Do you have any suggestions on helping with either one of these conditions?

Also, I'm looking into EnteroLab testing. The only thing is the cost. I'm currently on Medicare and State Medical Assistance for insurance so I'm sure I wouldn't get reimbursed. I would LOVE to be tested for all other food intolerance's! What's your personal opinion with EnteroLab? I see a lot of people on here have been tested through them and curious to whether that would help me or not?...

Again your feedback is MUCH appreciated!! :) I'm Tired of being soooo Tired!!! :(

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I'm in your shoes. Feel awful, all tests normal. They don't test enough and you're absolutely right that your "normal" might not be "normal". If you're sure you have leaky gut and candidiasis, SCD or even GAPS (http://www.gapsdiet.com) is probably a good first thing to try. Pay attention to how you feel after the sauerkraut or yogurt - it might help but fermented foods give me trouble because they are high in amines.

I wouldn't bother with ANY intolerance testing, especially if money is an issue. You will not get reimbursed for Enterolab becasue it's not a valid diagnostic test. All intolerance testing is very prone to false positives. As I said earlier, elimination is much more reliable than the testing and it's free.

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You can't be tested for celiac without eating a fair amount of gluten, which doesn't sound like a good idea. Two weeks is not even long enough. Chicago Celiac Center tells people to challenge for three months, other clinics say two.

I absolutely agree that consuming any amount of gluten is not a good idea for erikamarie.

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Thanks for your response. :) I'm not quite sure what you mean by giving my thyroid a good going over? I have my test results in front of me and it says my TSH results that I had done in January is 0.88 mIU/L and I'm assuming the other number 0.34-5.60 is the normal range. I'm not sure what this exactly means as the docs say my thyroid is fine. Are there more tests I should ask for? All your help is very much appreciated! :)

My TSH was in range also. My doctor prescribed Armour eventually anyway. It really helps. She told me to take it every 4 hours, and if I'm late, I absolutely crash.

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I KNOW there's something going on with my body I just don't know exactly where to start to figure it out??...

I have done a lot of researching about elimination diets...I just don't know which one to go by! How do you pick one? I'm leaning towards the SCD diet at the moment...although I am concerned with basically everything I eat..My biggest thing is I TRULY believe I have Leaky Gut and Systemic Candidiasis....

Do you have any suggestions on helping with either one of these conditions?

Also, I'm looking into EnteroLab testing. The only thing is the cost. I'm currently on Medicare and State Medical Assistance for insurance so I'm sure I wouldn't get reimbursed. I would LOVE to be tested for all other food intolerance's! What's your personal opinion with EnteroLab? I see a lot of people on here have been tested through them and curious to whether that would help me or not?...

Again your feedback is MUCH appreciated!! :) I'm Tired of being soooo Tired!!! :(

I can really relate to being sick and tired of being sick and tired. A former coworker even wrote, sang and recorded a song about that for me. You are on the right track with all of this: the leaky gut, the candidiasis, the scd, the tests you want. I knew I had the leaky gut and candidiasis before I heard of gluten. Listen to your body.

I spent thousands of dollars on tests, out of my own pocket, and they all helped, especially the really expensive food intolerance one. It is hard to find one with as many intolerances as me. Generally, the older you are at celiac diagnosis, the more food intolerances you are likely to develop from leaky gut, but I know one woman who is much younger than I who had more. Most of my food intolerances cause myalgia for 5 days or more, starting within 2 to 12 hours after eating them. These run the gamut of foods, but are every category of related food allergies I've heard of, like nightshades, and I've recently understood that I can't handle any cruciferous vegetables. I had to eliminate all herbs except oregano.

Obviously you can't afford all these tests, and they won't be covered. I have heard that 66% of celiacs are self-diagnosed. It's no wonder, with how sick we get and how unhelpful most doctors and health insurance is.

I was very happy with my enterolab testing, which I did a month after going gluten-free, including stool for antibodies to gliadin and tTG, fecal fat content, casein intolerance, and gene test. My doctor, an MD with more than 20 years of experience with gluten issues, diagnosed me based on the results. But I had my doubts after a couple of months of being gluten-free, until I got glutened in a restaurant, and got sicker than ever. Like Dr. Fine says, that is the best test.

I just had a positive blood panel, 4.5 years after diagnosis. I only eat meals I prepare from scratch from whole foods, and a few (right around 3 that I stick to) prepared foods, don't go into restaurants, and eat small samples of food prepared by a very experienced and knowledgable celiac chef every few months at a support group cooking class. But I was gluten symptomatic when I had the blood drawn. My doctor told me about a case where a patient of hers had a negative blood test, then had a positive one after being gluten-free for a year. The so called truths about testing for celiac are not true for everyone. It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.

Erikamarie, do you think you have the gluten successfully eliminated? How long has it been since you think you got contamination? Do you live with gluten consumers?

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An elimination diet is pretty simple really. You don't need to read a lot of theories about it or prescribed foods to eat etc. Just pick out 5 foods that you don't think will bother you and eat only those foods. After 2 weeks if you feel better then you are most likely ok with those foods. So pick out one additional food to add to your diet, again something that you don't think you will react too. It your same diet with plenty of that new food for 3 days. If you get sick then that new food is probably the reason. So eliminate it and try again.

Everything counts though, coffee, tea, sodas, spices, vitamin pills, meds, etc. Anything you consume is a potential problem, not just food.

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I have heard that 66% of celiacs are self-diagnosed.

Joe, This is a very specific statistic....where is this documented?

thanks!

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The so called truths about testing for celiac are not true for everyone. It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.

Nonsense! :blink:

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It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.

Again, is this statement based on ANY scientific data?

WHICH labs and researchers "know this"??

You keep posting statements as if they are "facts" and using random statistics and do not provide anything solid in support.

In the Blood Transfusion thread, too.

May I remind you of Board rule #5.

"Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry."

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I spent thousands of dollars on tests, out of my own pocket, and they all helped, especially the really expensive food intolerance one. It is hard to find one with as many intolerances as me. Generally, the older you are at celiac diagnosis, the more food intolerances you are likely to develop from leaky gut, but I know one woman who is much younger than I who had more.

again....?? I also had IgG testing done by an "integrative doctor" and paid out of pocket, but the reality is...we may have been "had". Mine said I had no "gluten antibodies", but I was a raging celiac. Sick to death.

http://www.ncbi.nlm.nih.gov/pubmed/10024224?dopt=Abstract

http://www.tldp.com/issue/174/IgG%20Food%20Allergy.html

http://www.sciencebasedmedicine.org/index.php/igg-food-intolerance-tests-what-does-the-science-say/

This does not mean that some Celiacs will not develop secondary intolerances (lactose or egg, for example) as a result of blunted villi. I did myself.

Here is a recent article that busts these claims:

"Claim: The IgG blood test is 95 percent reliable.

Reality: The test is prone to false positives and not considered reliable by any U.S. or European allergy or immunology society."

This is found in the following article....

Be wary of food intolerance tests — they may not live up to their claims

Published: April 19. 2012 4:00AM PST

If you’re considering taking a food intolerance test, it’s best to read the company’s marketing materials with a critical eye.

A quick scan of websites selling food intolerance tests revealed some inaccurate statements.

Here are some of the most common:

Claim: Food intolerances are caused by eating a repetitive diet; this overloads the immune system and the body responds by rejecting those foods.

Reality: “The gut-associated immune system is well-equipped to deal with loads of antigenic material, and there is just no evidence that it may become overloaded by exposure to large amounts of the same antigen,” said Stefano Guandalini, founder and medical director of the University of Chicago Celiac Disease Center.

Claim: The number of Americans with food allergies may have risen to a whopping 60 to 75 percent.

Reality: Food allergies, which are different from food intolerance, affect 5 percent of U.S. children younger than age 5 and 4 percent of older children and adults, according to the Centers for Disease Control and Prevention.

As many as 1 in 3 people think they have a food allergy, but only about 1 in 28 have a food allergy that has been confirmed by a health care official, the National Institute for Allergy and Infectious Diseases says.

Claim: Most insurance covers food intolerance testing.

Reality: Not true.

Claim: Hair sampling is a safe and noninvasive method of revealing nutritional deficiencies.

Reality: Hair is made up of a protein, keratin, that can be analyzed to determine its mineral content.

That data can be used to find out if the body is lacking in certain minerals, but it can’t tell you whether you have food intolerances, allergist Lee Freund wrote in “The Complete Idiot’s Guide to Food Allergies.”

Double-blind studies haven’t shown any diagnostic value for this test.

— Chicago Tribune

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I've had 2 things that made me tired since starting a gluten-free diet, and staying away from those things along with staying gluten-free has otherwise helped my energy levels a lot. The first thing was maltodextrin in a supplement, the supplement wasn't labeled gluten-free and I think the 'rule' about that ingredient being gluten-free doesn't necessarily apply for supplements? (At least in the U.S.) I'm not positive about that, but I now avoid it.

The other thing I tried recently that made me really tired was Udi's bagels. I'm not sure what it was, but it happened on 2 different occasions. I have a couple more bagels in the freezer that I might try again some day, but not in the near future. I've tried Against the Grain rolls, and was fine with those. I'm also fine with with Ener-G bread, as well as Rudi's cinnamon raisin bread.

The elimination diet mentioned earlier might be a good idea, or just keeping a food diary (or both!).

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. The first thing was maltodextrin in a supplement, the supplement wasn't labeled gluten-free and I think the 'rule' about that ingredient being gluten-free doesn't necessarily apply for supplements? (At least in the U.S.) I'm not positive about that, but I now avoid it.

Maltodextrin is safe.

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I've had 2 things that made me tired since starting a gluten-free diet, and staying away from those things along with staying gluten-free has otherwise helped my energy levels a lot. The first thing was maltodextrin in a supplement, the supplement wasn't labeled gluten-free and I think the 'rule' about that ingredient being gluten-free doesn't necessarily apply for supplements? (At least in the U.S.) I'm not positive about that, but I now avoid it.

In the US, FALCPA does apply to supplements. The only things exempt are prescription meds, liquor, and USDA-regulated foods like meat and eggs. USDA has a separate set of laws that require grain fillers to be declared so wheat is still labeled in meat and poultry.

Maltodextrin is almost always made from corn in the US and wheat maltodextrin would be labeled with a wheat allergen warning.

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My chiropractor gave me a Health Appraisal Questionnaire from Metagenics called MET423. Are you familiar with this company at all? My results were off the charts! It says I'm in the "High Priority" in almost every category of the body...

My biggest thing is I TRULY believe I have Leaky Gut and Systemic Candidiasis....

I'm currently on Medicare and State Medical Assistance for insurance so I'm sure I wouldn't get reimbursed. I would LOVE to be tested for all other food intolerance's!

Hon, a chiropractor is not medically trained to help you with your health problems. He gave you the Metagenics questionnaire so he could sell you some supplements. I saw this same thing from a massage therapist who was going to cure my gut. (she didn't)

Systemic yeast is a life-threatening condition that would have you in the hospital because your organs would be overgrown with an invasive yeast. This is not likely to be your problem.

People tout "systemic yeast" cures that do not help.

If you are worried about yeast, have stool testing done.

If you have visible yeast in your mouth or genital area, see a doctor and get a prescription for anti-fungals. If not, you are not dealing with a yeast overgrowth.

Take probiotics every day, especially if you take BC pills, estrogen or steroids or antibiotics. They will balance your gut flora. This may well be causing your fatigue.

of "systemic yeast", Dr. Weil states:

"This is a self-diagnosis based on the scientifically unfounded notion that Candida albicans, a species of yeast that normally lives harmlessly in the gastrointestinal tract and vagina, can routinely become a serious systemic infection responsible for a host of ailments. Systemic candidiasis is said to cause fatigue, depression, anxiety, skin eruptions, and immune system malfunction.

In fact, Candida albicans, sometimes can get out of control, causing vaginal infections, intestinal upsets, or infections of the mouth and throat (called thrush). In most cases, this is the result of prolonged or frequent use of antibiotics, which can wipe out the "friendly" bacteria that normally keep yeast in check. Other drugs that can wipe out intestinal flora or encourage overgrowth of yeast are steroids and estrogen, either in the form of birth control pills or hormone replacement therapy.

A book called "The Yeast Connection" by Dr. William Crook popularized the hypothesis that Candida is a major pathogen that can weaken the immune system, allowing other infections to occur. Dr. Crook also contends that toxins produced by Candida could contribute to the development of multiple sclerosis, rheumatoid arthritis and other autoimmune disorders.

There is little hard evidence for these ideas.

Diagnoses of systemic candidiasis usually have no scientific basis, and most of the recommended treatments for it waste time and money. Anyone with yeast growing in the blood or vital organs would be critically ill in an intensive care unit.

Despite this medical reality, systemic candidiasis remains a popular diagnosis in some segments of the alternative medicine community. My belief is that its persistence is an example of our fears of foreign invaders; it satisfies a need to blame our maladies on an external cause.

Most of the treatments used for this "disease" are harmless except for drugs like ketoconazole (Nizoral) and fluconazole (Diflucan) which can be toxic to the liver and should not be used except on the advice of an infectious disease specialist. A study reported a few years ago in the New England Journal of Medicine found that the more commonly used drug nystatin (Mycostatin) was no more effective than a placebo in treating people who thought they had systemic candidiasis.

My colleague and naturopathic physician, Judy Hutt, NMD, points out that although systemic candidiasis is an unfounded diagnosis, one should not ignore chronic gas and bloating and other refractory gastrointestinal complaints that develop after taking large doses of antibiotics or steroids. In addition to oral or topical antifungal treatments, other natural therapeutic options include taking a good acidophilus product (such as Lactobacillus GG) to help restore normal gut flora, cutting back on refined sugars, avoiding dairy products, and eating one clove of garlic per day, preferably raw."

Lactobacillus GG is found in the OTC probiotic, Culturelle.

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In the US, FALCPA does apply to supplements. The only things exempt are prescription meds, liquor, and USDA-regulated foods like meat and eggs. USDA has a separate set of laws that require grain fillers to be declared so wheat is still labeled in meat and poultry.

Maltodextrin is almost always made from corn in the US and wheat maltodextrin would be labeled with a wheat allergen warning.

Thanks for the in-depth clarification!

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My TSH was in range also. My doctor prescribed Armour eventually anyway. It really helps. She told me to take it every 4 hours, and if I'm late, I absolutely crash.

Wow thanks for the info! :) I will definitely bring it up to my doctor!

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I can really relate to being sick and tired of being sick and tired. A former coworker even wrote, sang and recorded a song about that for me. You are on the right track with all of this: the leaky gut, the candidiasis, the scd, the tests you want. I knew I had the leaky gut and candidiasis before I heard of gluten. Listen to your body.

I spent thousands of dollars on tests, out of my own pocket, and they all helped, especially the really expensive food intolerance one. It is hard to find one with as many intolerances as me. Generally, the older you are at celiac diagnosis, the more food intolerances you are likely to develop from leaky gut, but I know one woman who is much younger than I who had more. Most of my food intolerances cause myalgia for 5 days or more, starting within 2 to 12 hours after eating them. These run the gamut of foods, but are every category of related food allergies I've heard of, like nightshades, and I've recently understood that I can't handle any cruciferous vegetables. I had to eliminate all herbs except oregano.

Obviously you can't afford all these tests, and they won't be covered. I have heard that 66% of celiacs are self-diagnosed. It's no wonder, with how sick we get and how unhelpful most doctors and health insurance is.

I was very happy with my enterolab testing, which I did a month after going gluten-free, including stool for antibodies to gliadin and tTG, fecal fat content, casein intolerance, and gene test. My doctor, an MD with more than 20 years of experience with gluten issues, diagnosed me based on the results. But I had my doubts after a couple of months of being gluten-free, until I got glutened in a restaurant, and got sicker than ever. Like Dr. Fine says, that is the best test.

I just had a positive blood panel, 4.5 years after diagnosis. I only eat meals I prepare from scratch from whole foods, and a few (right around 3 that I stick to) prepared foods, don't go into restaurants, and eat small samples of food prepared by a very experienced and knowledgable celiac chef every few months at a support group cooking class. But I was gluten symptomatic when I had the blood drawn. My doctor told me about a case where a patient of hers had a negative blood test, then had a positive one after being gluten-free for a year. The so called truths about testing for celiac are not true for everyone. It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.

Erikamarie, do you think you have the gluten successfully eliminated? How long has it been since you think you got contamination? Do you live with gluten consumers?

Yes I'm the only one in my household gluten-free...It's hard to say when the last time I was glutened as I literally feel sick ALL the time!! I'm Seriously researching the SCD Diet to eliminate most foods so I can heal my gut and Then try and figure out what's causing me to be sooo sick...

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In the US, FALCPA does apply to supplements. The only things exempt are prescription meds, liquor, and USDA-regulated foods like meat and eggs. USDA has a separate set of laws that require grain fillers to be declared so wheat is still labeled in meat and poultry.

Maltodextrin is almost always made from corn in the US and wheat maltodextrin would be labeled with a wheat allergen warning.

I didn't realize it was made from corn..I'm glad you mentioned that because I have been researching corn intolerance and feel it is highly possible I'm intolerant to it. I say this because 2 days ago I at went out to eat to a mexican restaurant and ordered chicken, shrimp and steak fajitas and specified no wheat in seasoning so the waiter actually brought me out the seasoning they cooked with and it specified no msg as well as no wheat and I also ordered corn tortillas. Well when I got home and ate my left overs after a few hours I felt for the most part fine didn't think anything of it...well when I woke up my left eye was completely puffy and swolen underneath and my right eyelid was almost closed shut from being so swolen as well as both eyelids were beat red, dry and flaky and they itched sooo bad! I also was congested through my sinuses...today my eyes are still red, dry and flaky and still itch like Crazy and were a little swollen and again this morning I was congested when I woke up. I've NEVER had a reaction like this before to anything I've eaten! I'm thinking it's corn for the meir fact I ate 5 corn tortillas in 1 day, oh as well as popcorn that evening...tell me if this sounds right?..I don't know what else I would be reacting to like this?

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Yes I'm the only one in my household gluten-free...It's hard to say when the last time I was glutened as I literally feel sick ALL the time!! I'm Seriously researching the SCD Diet to eliminate most foods so I can heal my gut and Then try and figure out what's causing me to be sooo sick...

This may well be the problem. If you are sick ALL the time, it is possible that it is constant cross-contamination. You are probably being careful, but it is difficult for others to understand how easily we can be CCed.

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You can't be tested for celiac without eating a fair amount of gluten, which doesn't sound like a good idea. Two weeks is not even long enough. Chicago Celiac Center tells people to challenge for three months, other clinics say two. The genetic tests are not terribly useful as far as telling apart celiac vs. gluten intolerance since you can be gluten intolerant with DQ2 and celiac without the so-called celiac genes.

As Beachbirdie says, you need thyroid testing. Probably also iron, B12, vitamin D, and a lot of naturopaths are starting to look at zinc deficiency as a problem for some people. You probably also need to be tested for lyme disease, mono, and other common causes of chronic fatigue.

You might consider an elimination diet for a couple weeks. Lamb (or turkey if you can't afford lamb and don't eat turkey often), rice, and pears is a pretty classic allergy elimination. If you feel better eating only a few foods that don't tend to cause people problems you know there is a food intolerance involved.

Skylark, quick question by eating Lamb (or turkey), rice, and pears how is this a classic allergy eliminator? Would you suggest eating just these 3 things for some time???...I guess I'm a little confused?..Thanks again for your help :)

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    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
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