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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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    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
    • I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed. Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 
    • I agree with all the advice you have been given.  It is excellent!   I just want to add that things will get better.  There is a huge grieving process to go through.  Do not fight it.  You have a right to grieve as your health and lifestyle will change, but you will adapt!  Exercise gently until you feel a bit better.  There is plenty of time to exercise hard later.  Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning  on her bike through the Santa Ana winds (better known as the Devil's winds!).  But I am three years into my recovery.  I took it easy the first six months because I was anemic.  I teach few exercise classes, bike, swim and run and I am in my 50's.   The SCD website?  It can scare the (bleep) out of you.  There was one point that I took from the site and that was to stick to whole nourishing foods.  No rocket science -- just common sense.    
    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
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