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Are There Any Blood Tests If I'm Already gluten-free?


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#16 ciamarie

 
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Posted 29 April 2012 - 06:10 PM

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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#17 IrishHeart

 
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Posted 29 April 2012 - 06:56 PM

. 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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#18 Skylark

 
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Posted 30 April 2012 - 10:51 AM

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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#19 IrishHeart

 
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Posted 30 April 2012 - 11:38 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#20 ciamarie

 
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Posted 30 April 2012 - 06:56 PM

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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#21 erikamarie87

 
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Posted 30 April 2012 - 07:39 PM

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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#22 erikamarie87

 
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Posted 30 April 2012 - 07:50 PM

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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#23 erikamarie87

 
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Posted 30 April 2012 - 08:12 PM

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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#24 IrishHeart

 
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Posted 01 May 2012 - 05:41 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#25 erikamarie87

 
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Posted 01 May 2012 - 05:12 PM

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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#26 Skylark

 
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Posted 01 May 2012 - 07:08 PM

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 :)

They are foods that people are not commonly allergic to. Lamb is the least common allergy, but turkey allergy is relatively uncommon and it's a lot cheaper if the cost of lamb is an issue. If you suspect fructose intolerance (bloating, diarrhea, flatulence, nausea, reflux) you might eat lettuce instead of the pears.

Eat only those foods for at least a week, if things start to improve then stay on them until you get a few good days in a row. It took me a week to start to feel better, two weeks to where my stomach had really settled down. Then you can start to introduce new foods one at a time. You add the food, eating a few servings of it over a day or two and watch at least 48 hours for a reaction. If that goes OK, add another. Keep a diary as you go in case something gets confusing.
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#27 erikamarie87

 
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Posted 01 May 2012 - 08:33 PM

They are foods that people are not commonly allergic to. Lamb is the least common allergy, but turkey allergy is relatively uncommon and it's a lot cheaper if the cost of lamb is an issue. If you suspect fructose intolerance (bloating, diarrhea, flatulence, nausea, reflux) you might eat lettuce instead of the pears.

Eat only those foods for at least a week, if things start to improve then stay on them until you get a few good days in a row. It took me a week to start to feel better, two weeks to where my stomach had really settled down. Then you can start to introduce new foods one at a time. You add the food, eating a few servings of it over a day or two and watch at least 48 hours for a reaction. If that goes OK, add another. Keep a diary as you go in case something gets confusing.


Wow thanks for the advice! :D Would you suggest doing this before going on the GAPS or SCD or would it be pointless then?...My only concern is I feel I need to heal my gut...What's your take on this? I guess I'm confused because what if I'm intolerant to the foods suggested on these diets? How would I know if the diet was ever truly working or not if I could possibly be intolerant to a food listed on the diet but yet didn't know?...I guess I just don't know where to start?...I've been keeping a food journal and seem to have found I'm intolerant to corn :/ ...that's a tricky one I think...I'm also finding that soy is a problem and I'm already lactose intolerant. So if this is the case than what would I put in place of these(for example)if called for on the diet?..Would the diet still be affective if I was to change it up a bit?...I was reading on the SCD that the foods that are legal are for the reason being the chemical makeup of them together, etc was why the diet is so effective with the healing process. Would it be safe to say if I went on the Gaps for instance and healed my gut that I wouldn't be as intolerant to many of the foods I'm finding I am? I feel like I need some sort of guidance and starting point to move along with my healing process. If you could give me any and all the advice you could that would be WONDERFUL as I think you're very intelligent on this matter and I can sense your trustworthiness and honesty. ;) You've been such a Great Help I can't thank you enough!! Also I get a better understanding when I have a book in front of me so I can refer to it when needed. Do you suggest any that would help? I have "Breaking the Vicious Cycle", and am currently looking at ordering the "Gut and Psychology Syndrome" as well as the "Management Of Celiac Disease by Sidney Valentine Haas...but if I should stick to the GAPS diet I would like to find some others as well that would be of much help. I know I'm asking a lot here. :/ Thanks again!
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#28 ravenwoodglass

 
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Posted 02 May 2012 - 04:50 AM

If you suspect you may have multiple intolerances you could see an allergist who will help you with a starting point for an elimination diet. Not all allergists deal with intolerances so do ask before you make an appointment. Typically the doctor will take a detailed history of all the foods you usually eat and then give you a starting point with about 5 foods that will give you adaquate nutrition and calories. My allergist was the one who pinpointed celiac and then referred me back to my clueless GI for confirmation. I hope you are feeling better really soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#29 erikamarie87

 
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Posted 03 May 2012 - 06:56 PM

If you suspect you may have multiple intolerances you could see an allergist who will help you with a starting point for an elimination diet. Not all allergists deal with intolerances so do ask before you make an appointment. Typically the doctor will take a detailed history of all the foods you usually eat and then give you a starting point with about 5 foods that will give you adaquate nutrition and calories. My allergist was the one who pinpointed celiac and then referred me back to my clueless GI for confirmation. I hope you are feeling better really soon.


Thanks for your input :) I seen an allergist about 4 years ago and they tested me for EVERY food allergy and of course they all came back normal but as you said they don't all deal with food intolerance's. I'm skeptical even trying to go somewhere else b/c ALL docs seem to think it's all in my head! I'm sooooo tired of it! :( I recently went to my doc for my Fatigue and she basically said she couldn't do anything about it so referred me to a GI, who I see on the 16th. Do you have any suggestions as far as tests he could perform as far as looking at the actually damage to my gut or if I'm absorbing nutrients, minerals correctly? All my blood tests seem to be 'normal' as they say... <_<
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#30 fannyarbuckle

 
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Posted 04 May 2012 - 07:53 PM

I have a question about testing. 2 years ago I tested positve, according to my doctor, with a gluten intolerance. This week i went in with an order to have a celiac panel. Today the dr. said that the results were negetive but he wants me on allergy serum because I tested positive to skin test to garlic and apricot. The test results from what I can read- I asked for a copy- Shows only the IG antibody, IgA 3.26 and then again -IgA 186. I have a sister who was diagnosed by biopsy 20 years ago and another sister diagnosed by blood and biopsy 2 weeks ago.
I definitely feel better on a gluten free diet. I have IBS (diarrhea and constipation, cramping, nausea, fatigue and headaches and had gallbladder removed due to a stone). I am hypothyroid and have tested positive for arthritis. I have not been to a gasto or an enterologist, but have appointments at the end of the month. Should I bother? There is a family history of thyroid, psoriasis, celiac, colon cancer, diverticulits, diverticulosis, stomach ulcers and gallbladder disease. I ate gluten for about 5 days before the last blood test and just a little off and on for the months prior. Not everyday but a little on the weekends. Did that skew the test? The test I took 2 years ago also was done right after I had been avoiding gluten for awhile. I am so confused. Someone even said it was in my head!
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