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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Aussiemum

Diagnosis confusion

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Hi I have a 11 year old daughter who has had severe fatigue for several months. GP did blood test which showed that she was positive to deaminated gliadin Igg but negative to h-tTG iga and iga normal range 1.89 (.74-2.28) 

Her iron studies were normal except her TRF saturation was low 15% (16-45)

she has the occasional GI symptoms sore muscles and mouth ulcers however nothing significant. Her dad is a type 1 diabetic.

we saw a paediatric gastro today who said that the coeliac test was false positive and that she is iron deficient and needs a iron infusion  she also stated we will need to work out cause of iron deficiency as it can be a malabsorption problem!!!!

none of it makes sense as her iron levels appear mostly normal. 

feeling confused.

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Did they perform a endoscope and biopsy? The standard is to perform a endoscope while consuming gluten prior, and checking for damage to the villi via biopsy under a microscope. The blood test can be iffy with some people and even the endoscope on rare occasions can miss it as the surface area of the intestines is quite large.   As mentioned you have to be consuming at least half a slice of bread worth of gluten a day for 12 weeks for the blood test 2 weeks I think for the endoscope. Some suggest more like 1-2 slices worth of gluten.

As to the iron, if you want to improve iron absorption look into a vitamin C supplement in addition as vitamin C facilitates iron absorption. You might want to have everything else checked also. Common issues that cause sore muscles and GI issues are also nutrient deficiency related, Magnesium, all b-vitamins, folate, etc. are common ones. I personally still have to supplement in large amounts even years after some healing. Depending on her GI issues, I would suggest 1 of 2 brands of magnesium that can be mixed in a drink. If she has constipation like issues Magnesium Calm starting off at 1/4 tsp dose and slowly work up over a week or so. If she has D issues then doctors best which is easier on the stomach and is also powdered and mixed in a drink so no pills. just mix it in juice. As to vitamins look at Liquid Health and pick the product that best suits her needs great company gluten-free, and the stuff is liquid so you add it to a drink no pills.

EVEN if she comes back negative for celiac, Non Celiac Gluten Sensitivity (NCGS) is a real issues that can have very similar issues, and can not be diagnosed with testing. In which case trying the gluten-free diet for a few months to see how she does is the only real test.

I am going to suggest keeping a food diary, write down EVERYTHING she eats and how it is fixed, seasonings, spray oils, condiments, brands etc. Record how she feels or anything you notice hours after food consumption. Try rotating the diet, using different foods as unprocessed as possible, different seasonings, cooking methods etc. Now look for patterns, and see what food make her feel worse.

 

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8 hours ago, Ennis_TX said:

Did they perform a endoscope and biopsy? The standard is to perform a endoscope while consuming gluten prior, and checking for damage to the villi via biopsy under a microscope. The blood test can be iffy with some people and even the endoscope on rare occasions can miss it as the surface area of the intestines is quite large.   As mentioned you have to be consuming at least half a slice of bread worth of gluten a day for 12 weeks for the blood test 2 weeks I think for the endoscope. Some suggest more like 1-2 slices worth of gluten.

As to the iron, if you want to improve iron absorption look into a vitamin C supplement in addition as vitamin C facilitates iron absorption. You might want to have everything else checked also. Common issues that cause sore muscles and GI issues are also nutrient deficiency related, Magnesium, all b-vitamins, folate, etc. are common ones. I personally still have to supplement in large amounts even years after some healing. Depending on her GI issues, I would suggest 1 of 2 brands of magnesium that can be mixed in a drink. If she has constipation like issues Magnesium Calm starting off at 1/4 tsp dose and slowly work up over a week or so. If she has D issues then doctors best which is easier on the stomach and is also powdered and mixed in a drink so no pills. just mix it in juice. As to vitamins look at Liquid Health and pick the product that best suits her needs great company gluten-free, and the stuff is liquid so you add it to a drink no pills.

EVEN if she comes back negative for celiac, Non Celiac Gluten Sensitivity (NCGS) is a real issues that can have very similar issues, and can not be diagnosed with testing. In which case trying the gluten-free diet for a few months to see how she does is the only real test.

I am going to suggest keeping a food diary, write down EVERYTHING she eats and how it is fixed, seasonings, spray oils, condiments, brands etc. Record how she feels or anything you notice hours after food consumption. Try rotating the diet, using different foods as unprocessed as possible, different seasonings, cooking methods etc. Now look for patterns, and see what food make her feel worse.

 

That's the frustrating part the dr said she wouldn't do a scope based on her blood results!!

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Hi Aussiemom - 

Quote

we saw a paediatric gastro today who said that the coeliac test was false positive

 

First up, I'm sorry your daughter is sick. I know that sucks.

My daughter had a high test result on the Deamidated Gliadin IgG test (in U.S. called DGP-IgG) and was negative on TTG-IgA with total IgA serum being normal. We have a really strong family history of celiac disease, so we were on watch. Our daughter was given an endoscopy because of the strong family history,  and the high blood test, plus atypical symptoms. The scope didn't find anything.

We were then told by the pediatric gastroenterologist that the blood test 'might be a false positive or it might be meaningless.' So we sat on that information for almost five months. In those five months I watched my daughter get sicker and develop other autoimmune complications - worsening rashes, pain, worsening bowel symptoms, loss of pigment on her torso, and ultimately the beginnings of impaired thyroid function. I kept searching for answers, reading more, and realizing how incredibly complicated celiac diagnosis can be. Some of the best experts in the world describe the disease as a chameleon -- it can affect any system and hide in surprising ways. In a different post on this forum I read someone describe it as "my celiac disease doesn't look like your celiac disease." This is borne out in my husband's family too -- he, his sis, and his dad are all diagnosed. They all had major symptoms that cleared on a gluten free diet and the craziest part is that between these three closely related individuals they had almost no overlapping symptoms. (Between them they also have multiple other AI diseases and complications - hashimoto's thyroiditis, dermatitis herpetiformis, psoriasis, diabetes, joint issues and skin carcinomas)

For our daughter, we eventually retested. Same results. High DGP-IgG, TTG-IgA normal. In our daughters case, it absolutely wasn't a false positive, and we absolutely couldn't ignore the result.  

I have asked two different doctors at a major celiac center in the United States what a high DGP-IgG result along with symptoms means, and it has become clear to me that even the experts at the center I went to could not provide clear answers. They know the DGP-IgG test is better for catching early celiac in pediatric patients under three, but they don't know seem to know what to do with the test results for older kids. This is a disease where the science absolutely isn't where it needs to be for proper diagnosis.

I am not a doctor, and I know there is much I don't know, but my basic understanding of the science is this -- 

If your daughter's body is making an abnormally high number of antibodies against deamidated gliadin (one of the protein molecules in wheat gluten) then her immune system is recognizing gliadin as an antigen -- a toxin. Now maybe her body can keep reacting with a hypersensitivity to gliadin indefinitely.... or maybe her body has reached a tipping point, where her hypersensitivity to gliadin has stressed out her immune system, and a stressed out immune system is going to make her sick in one way or another.

When we got our second high test result, we put our daughter on a gluten free diet immediately. The second doctor agreed this was the right step. We are currently checking if she will have a positive response to the gluten free diet. We hope she will. 

In all my reading, two things I found the most helpful were the many kind and informative posts and posters on this site, and reading the research of Doctor Alessio Fasano (a leading U.S. researcher on causes in the U.S). who speaks more about the types of other symptoms/reasons/and possible autoimmune effects than others - this seemed closer to what we were seeing in our family. I'll include a link here to an interview series he did on a blog because I found it really readable -- but if you prefer to read his actual published medical papers they are also easy to find online. The link is to old interviews, but you can follow through to more recent interviews at the site if you find it helpful.

http://www.tenderfoodie.com/blog/2011/12/19/interview-w-dr-alessio-fasano-part-1-should-anyone-eat-glute.html

Two last thoughts -- from what I can tell, false positives on that test are extremely rare - estimated between 1-3% - and that would possible describe only an equivocal or borderline positive (say a 21 when 0-19 is the normal reference range) - not a strong positive result. Your daughters body is reacting to gliadin in an atypical way, and that is suspicious. And -- maybe ask your diabetic husband to do a full celiac panel. My diabetic father-in-law caught his celiac disease late -- he claimed he had no symptoms (silent presentation) which can happen -- or maybe he chalked some symptoms up to management of his diabetes -- which he knew about. Either way, it is so much better for his health that he is on the gluten-free diet now. My husband's diabetic + celiac first cousin also found the diabetes first and the celiac later, but her doctors feel certain that the celiacs preexisted the diabetes.  In the med lit its pretty clear that some presentations of diabetes and celiacs really like to hang out together.

 

I hope you find some answers and see your daughter's health improving soon. 

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A note about false positives (I used to develop blood tests for antibodies, similar to the celiac tests).  False positives can be high or near the normal range.  It just means that the result doesn't agree with the "gold standard" which for celiac is a biopsy, even though biopsies aren't perfect either.  Repeating the test and getting the same result does NOT mean that the result is a real positive either.

With the tests we were developing, I came up high positive for an IgE antibody mediated allergy to cats.  I always came up very high. I did not test as allergic to other antigens.  I am not allergic to cats.  I was not allergic per the competitor's test.  I did a scratch test on myself (we also made allergy extracts for skin testing) and did not react.  There was just something abut my blood that always gave a false positive result.

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Okay, RGM --- but from what I've read this is apples and oranges. They aren't equivalent types of testing, especially when considering false positives. 

For IgE allergy testing the false positive rates for both the skin prick tests and the blood tests are at 50-60%:

https://www.foodallergy.org/life-food-allergies/food-allergy-101/diagnosis-testing/blood-tests

The IgE antibody tests you mentioned are well known for and in fact are pretty notorious for being tests that yield false positive results. In fact, a false positive is a likely explanation for a positive IgE allergy test. For IgG 'food sensitivities' the testing error rates are the same. You can have positive antibody results show up on these tests just because your body recognizes a food you have eaten in the past. That is why some people wind up with bizarre lists of dozens of foods they aren't actually allergic to....And it is why elimination trials remain the gold standard in competent allergy testing.

On the other hand, the celiac blood tests -- which are all antibody tests (both the TTG tests and the DGP tests which can both be done on IgA or IgG are measuring antibodies) -- are not notorious for yielding false positives. In fact, the opposite is true. They are more likely to yield false negatives -- as in people with biopsy confirmable celiac disease - will not have positive blood tests. The false negative rate for the tests is estimated between 2% and 10% of all celiacs. My SIL is a seronegative celiac who had marsh iii lesions everywhere by the time they finally did the endoscopy. She had symptoms and false negative blood tests for literally decades before she finally convinced someone to do an endoscopy. She was very very sick and suffered multiple other health consequences by not being diagnosed sooner.

In addition, a false positive on one of these celiac specific antibody tests is considered rare, estimated between 1 and 3% ....and even experts aren't sure if it is because the endoscopy failure rates are around 4% (the scope just missed the damage) or if it is because the person is NCGS or in early stages and has damage elsewhere but not yet in their intestinal villi. Compare those 60% failure rates on the IgE allergy tests, to this description of the DGP tests --- especially the DGP IgG test that Aussiemom's daughter tested positive for:

Quote

...tests for DGP ...These tests are derived from the understanding that the deamidation of gluten by tTG makes gliadin peptides more potent activators of T-cells in celiac disease patients (13). DGPs are formed by the action of tTG on gliadin. Both IgG and IgA tests are available.... there is some preliminary data indicating that the DGP-IgG test may become a useful test in IgA deficiency (15,16). Sensitivity for DGP-IgG is reasonable, with results between 69% and 81%, while specificity is excellent, with results between 97.8% and 99.6%. ....Until now, there are no recommendations that tTG tests be replaced by DGP-AGA, but these tests may aid in the diagnosis of patients who are symptomatic and seronegative for tTG, and in children younger than two years of age. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088693/

As far as I understand, the lower sensitivity means this test might miss people who actually have the disease. On the other hand the DGP IgG test is considered very medically specific:

Quote

Specificity: 

If a person does not have the disease how often will the test be negative (true negative rate)?


In other terms, if the test result for a highly specific test is positive you can be nearly certain that they actually have the disease.

A very specific test rules in disease with a high degree of confidence.

https://www.med.emory.edu/EMAC/curriculum/diagnosis/sensand.htm

So.... she could take the GIs word for it that her daughter, whom he did not scope, and who is symptomatic, definitely had a false positive on this highly specific test for celiac disease (an unlikely explanation), or she could test more, get a second opinion, and try to figure out more conclusively if gluten is adversely affecting her daughter....which is actually not unlikely. I don't know the stats in Australia off hand, but in North America it's currently estimated that 1% of the total population are celiacs, and more than 80% of them don't know it yet.....

 

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On 06/09/2017 at 1:26 PM, Celiac's Wifey said:

Hi Aussiemom - 

 

First up, I'm sorry your daughter is sick. I know that sucks.

My daughter had a high test result on the Deamidated Gliadin IgG test (in U.S. called DGP-IgG) and was negative on TTG-IgA with total IgA serum being normal. We have a really strong family history of celiac disease, so we were on watch. Our daughter was given an endoscopy because of the strong family history,  and the high blood test, plus atypical symptoms. The scope didn't find anything.

We were then told by the pediatric gastroenterologist that the blood test 'might be a false positive or it might be meaningless.' So we sat on that information for almost five months. In those five months I watched my daughter get sicker and develop other autoimmune complications - worsening rashes, pain, worsening bowel symptoms, loss of pigment on her torso, and ultimately the beginnings of impaired thyroid function. I kept searching for answers, reading more, and realizing how incredibly complicated celiac diagnosis can be. Some of the best experts in the world describe the disease as a chameleon -- it can affect any system and hide in surprising ways. In a different post on this forum I read someone describe it as "my celiac disease doesn't look like your celiac disease." This is borne out in my husband's family too -- he, his sis, and his dad are all diagnosed. They all had major symptoms that cleared on a gluten free diet and the craziest part is that between these three closely related individuals they had almost no overlapping symptoms. (Between them they also have multiple other AI diseases and complications - hashimoto's thyroiditis, dermatitis herpetiformis, psoriasis, diabetes, joint issues and skin carcinomas)

For our daughter, we eventually retested. Same results. High DGP-IgG, TTG-IgA normal. In our daughters case, it absolutely wasn't a false positive, and we absolutely couldn't ignore the result.  

I have asked two different doctors at a major celiac center in the United States what a high DGP-IgG result along with symptoms means, and it has become clear to me that even the experts at the center I went to could not provide clear answers. They know the DGP-IgG test is better for catching early celiac in pediatric patients under three, but they don't know seem to know what to do with the test results for older kids. This is a disease where the science absolutely isn't where it needs to be for proper diagnosis.

I am not a doctor, and I know there is much I don't know, but my basic understanding of the science is this -- 

If your daughter's body is making an abnormally high number of antibodies against deamidated gliadin (one of the protein molecules in wheat gluten) then her immune system is recognizing gliadin as an antigen -- a toxin. Now maybe her body can keep reacting with a hypersensitivity to gliadin indefinitely.... or maybe her body has reached a tipping point, where her hypersensitivity to gliadin has stressed out her immune system, and a stressed out immune system is going to make her sick in one way or another.

When we got our second high test result, we put our daughter on a gluten free diet immediately. The second doctor agreed this was the right step. We are currently checking if she will have a positive response to the gluten free diet. We hope she will. 

In all my reading, two things I found the most helpful were the many kind and informative posts and posters on this site, and reading the research of Doctor Alessio Fasano (a leading U.S. researcher on causes in the U.S). who speaks more about the types of other symptoms/reasons/and possible autoimmune effects than others - this seemed closer to what we were seeing in our family. I'll include a link here to an interview series he did on a blog because I found it really readable -- but if you prefer to read his actual published medical papers they are also easy to find online. The link is to old interviews, but you can follow through to more recent interviews at the site if you find it helpful.

http://www.tenderfoodie.com/blog/2011/12/19/interview-w-dr-alessio-fasano-part-1-should-anyone-eat-glute.html

Two last thoughts -- from what I can tell, false positives on that test are extremely rare - estimated between 1-3% - and that would possible describe only an equivocal or borderline positive (say a 21 when 0-19 is the normal reference range) - not a strong positive result. Your daughters body is reacting to gliadin in an atypical way, and that is suspicious. And -- maybe ask your diabetic husband to do a full celiac panel. My diabetic father-in-law caught his celiac disease late -- he claimed he had no symptoms (silent presentation) which can happen -- or maybe he chalked some symptoms up to management of his diabetes -- which he knew about. Either way, it is so much better for his health that he is on the gluten-free diet now. My husband's diabetic + celiac first cousin also found the diabetes first and the celiac later, but her doctors feel certain that the celiacs preexisted the diabetes.  In the med lit its pretty clear that some presentations of diabetes and celiacs really like to hang out together.

 

I hope you find some answers and see your daughter's health improving soon. 

Thanks we went back to our usual GP as he wasn't the one who ordered the initial blood test and wasn't the one who sent us to the specialist. He said that we will redo coeliac screen and also do the gene test. He also gave me forms for my partner to go and have screening done too. We have had the testing done just waiting for the results does anyone know how long the gene test takes. We are really hoping that is was a false positive and her symptoms are just from her iron deficiency. So in the mean time we have started her on iron supplements and keeping everything crossed.

 

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Best wishes to your family & especially your daughter!

I think my daughter's gene test results took about five days. The gene tests generally look for HLA DQ2&DQ8 haplotypes, because these are the best understood genetic markers associated with the disease -- and some of them are starting to be associated with specific types of celiac damage in the med literature  (like double DQ2s tend to have severe intestinal damage appearing sooner than other types). But just so you know (not because I want to worry you, but in case your doctor is not aware) there are instances of biopsy confirmed celiacs without those two genetic types. DQ8 is actually a subtype of DQ3 - the three subtypes of DQ3 are DQ7, DQ8, and DQ9. I know of biopsy confirmed celiacs that are double DQ7 and double DQ9, so maybe retain a little suspicion if one of those types comes up. DQ7 has also come up in a large recent Italian study as a separate risk for celiac in addition to DQ2&8. Most places in the U.S. estimate that about 0.4% of celiacs are DQ2DQ8 negative -- that sounds really rare but it actually means one out of every 250 celiacs is 'genetically negative'....so if you put that together with 1% of the population figure.... its still about a million people who have celiac disease, and are DQ2/DQ8 negative, in North America alone. And in Europe the estimates are higher. Most European studies put the number of DQ2/DQ8 negative celiacs at between 2-6% of celiacs. Sorry I don't have Australia specific numbers for you! I really didn't mention this to freak you out, because the first ped GI we saw told us that if our daughter didn't 'have the genes' we didn't have to worry about it....and that turned out to be wrong....as we figured out watching how much sicker she got. :( 

She is double DQ7, but is not biopsy confirmed. Her dad is biopsy confirmed, but hasn't been genetically tested -- we know he has one DQ7 allele because of her test, but we don't know his other gene. We have been speculating in our house (with absolutely no medical backgrounds..ha..... but we do have lots of practical experience with this disease....so chalk this up as a semi-domesticated guess...) that the DQ7 types might be carrying the innate autoimmune problem vs. the adaptive type of autoimmune problem in celiac disease. We are speculating this because my daughter is actually, as far as we can tell, fourth generation with this problem - husbands grandmother died of super-rare intestinal cancer after a lifetime of 'tummy troubles' and with a specific type of early onset dementia that has now been linked to celiacs -- she was never diagnosed because it was a million years ago. Husband's father (and his uncle) are both biopsy confirmed celiacs, husband and his sister (and multiple first cousins) are biopsy confirmed celiacs, and now daughter, seropositive on DGP-IgG only, totally symptomatic (including weird things like mildly clubbed toe nails), and two genes just being better recognized as risk types..... 

So... I will absolutely be crossing my fingers for you, too, that it isn't celiac and that iron makes your daughter 100%....(but I'll also add that something worse than being a celiac and knowing it, is being a celiac and not knowing it. ! Not knowing you have it puts you at increased risk for cascading autoimmune disorders, infertility, miscarriage, cystic acne, neurological damage, (nerve damage, peripheral neuropathy, some types of depression and anxiety disorders)...and a whole list of other horrible things. A celiac diagnosis is really tough, but lots of supportive help is available if that turns out to be the case - and I have great gluten-free scone & butter cookie recipies I'll happily share if you like to bake....

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"For IgE allergy testing the false positive rates for both the skin prick tests and the blood tests are at 50-60%:"

That is about food IgE allergy testing, allergy testing for pollens and cat dander is far better.

 I was just trying to define what a false positive is from a scientific point of view.

 

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RMJ, sorry if my reaction was over-the-top.... like your cat dander reaction? I just want to make sure this mom can be thorough in follow up if she needs to be, because I really do think, based on lots of people in my family, that not knowing is bad news. Of course there are false positives and it was good of you to clarify.

(But from now on, I will secretly assume that all cat dander is made out of gluten, and that is why your blood reacted to it.....:ph34r: kidding).

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Wifey, I agree, high result should be investigated, not just assume it is false positive because it is weird.

(The marketing department couldn't believe the test could be wrong and was convinced I was going to go into anaphylactic shock when I did the cat allergen skin test).

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Was back getting yet another blood test today as the person who took the gene test used the wrong tubes😫😫😫luckily I could bribe her enough to get it done again this time thankfully with the blood lady that usually does her bloods and who does it correctly. She also said it will take two weeks to get result. 

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Finally got the results of the gene test today. She came back positive to DQ2 so our GP has sent a referal to a another paediatric gastro for us to take her to. This paed was also the same paed that the coeliac society suggested we see after I contacted them after the bad experience I had with the first gastro I was referred to.

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Thanks for updating us. Yay for the referral to the pet GI that the celiac society suggested!

Please continue to keep us updated. 

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My daughter is having her scope on Tue he said it could still be normal as her bloods even though positive they weren't highly positive. But due to the fact of her on going fatigue even with iron supplements her positive gene test and her dad being a type one diabetic he thinks it's best that he does the scope. Should I start gluten free trial straight after the scope as we can't get back in for results for two weeks and I feel her fatigue is getting worse and we were thinking of trialing gluten free even if scope is negative any thoughts

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6 minutes ago, Aussiemum said:

My daughter is having her scope on Tue he said it could still be normal as her bloods even though positive they weren't highly positive. But due to the fact of her on going fatigue even with iron supplements her positive gene test and her dad being a type one diabetic he thinks it's best that he does the scope. Should I start gluten free trial straight after the scope as we can't get back in for results for two weeks and I feel her fatigue is getting worse and we were thinking of trialing gluten free even if scope is negative any thoughts

Yes after the scope is done go ahead and get her on the diet. You may see improvement even before the results are back.

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http://healthyeating.sfgate.com/nutrients-needed-red-blood-cell-production-5131.html

More than just iron is needed to correct anemia.  Several B vitamins, copper and vitamin A are needed, too, and are often low in newly diagnosed Celiacs.  Celiac Disease causes malabsorption which results in malnutrition.  Supplementation may be necessary until the body heals enough to absorb nutrients better.  Checking for vitamin and mineral deficiencies might be a good idea.

http://www.mdpi.com/2072-6643/5/10/3975/htm

Hope this helps.

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Well endoscopy done this morning. Said that all looked normal no sign of celiac seen normal duodenal cap and preserved villi. but need to wait for biopsies. Report stated  mild antral gastritis with erythema found  but non specific. Seems like they took a lot of Biopsies. Report stated they took them from lower 3rd and middle 3rd of oesophagus,  the antrum of stomach and area in bulb and 1st,2nd and 3rd part of duodenum. So will wait and see two other children in recovery with us had visible damage on their scope so were told they have celiac disease. Dr review clinic not for two weeks. Thanks for everyone for listening we just want some answers now for her increasing fatigue. But maybe it's not celiac after all. 

 

 

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On 06/10/2017 at 11:01 PM, squirmingitch said:

Thanks for updating us. Yay for the referral to the pet GI that the celiac society suggested!

Please continue to keep us updated. 

Hi just thought I'd update where we are at. Firstly whilst waiting for the GI follow up appointment I took my daughter to a paediatric dietitian who said even if biopsies are normal do you want to  sit back and watch her get worse while you wait for her to show damage. So we started her on gluten free after a week her fatigue started to lift. GI appointment scope results and biopsy negative told him about gluten free he said he happy for her to be gluten free as she probably gluten intolerant. He wants her to stop her iron in 4 weeks wait 4 weeks then retest as well as allergy test for wheat egg soy and dairy.  I should ad that her dgp igg bloods were positive again at time of scope but he said they were probably caused by possible allergy and that they were improving the results were 11,10,9 so still no definite answers but with positive bloods positive gene and positive symptom response to gluten free  I think that is what we have to do and she isn't happy about it lol😂😂😂

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    • Just needed to point this out while it seems the UK and perhaps even Canada they are. The US McDonalds has wheat in the fries.
      Second thought in the US you have to a take more careful with CC and chains, the kids go in and out of these like crazy and think gluten free is a kind of fad. I would avoid chains of fast food restaurants here if celiac.
      Sorry just did not want some bloke from here in the US seeing this and going OOHHH the fries are SAFE, then blam married to the toilet for hours.
      " FRENCH FRIES Ingredients: Potatoes, Vegetable Oil (Canola Oil, Corn Oil, Soybean Oil, Hydrogenated Soybean Oil, Natural Beef Flavor [Wheat and Milk Derivatives]*), Dextrose, Sodium Acid Pyrophosphate (Maintain Color), Salt. *Natural beef flavor contains hydrolyzed wheat and hydrolyzed milk as starting ingredients. Contains: WHEAT, MILK. " https://www.mcdonalds.com/us/en-us/product/small-french-fries.html PS I have worked concessions years ago,,,,the fryers were like toys to us, we fried other foods for giggles.....so you can imagine how it might be a issue with a CCed fryer even with any place that has a non dedicated gluten-free fryer.  
    • I hope I'll be fine too.
    • Bone scan is because coeliac (may as well spell it right if I'm talking to a countryman  ) can affect bone density and is linked to osteoporosis  https://www.bones.nih.gov/health-info/bone/osteoporosis/conditions-behaviors/celiac the thing about the diet is that gluten isn't something that disagrees with you, or that you have to cut down on, or just save for special occasions. It would be nice if that were the case, but it's just not so. its your immune system which is being triggered. It's not an instant reaction, so you can fool yourself into thinking that it's ok. what the tests show however is that the damage is taking place over a longer term and across your body. For your own sake you need to develop this understanding. Joining coeliac uk would help. You get a book / online directory of safe foods and others to meet up with if you want. if your out and hungry McDonald's fries are ok. If dairy ok then have a strawberry sundae, not the toffee one. Those and a coffee are all I have from there now, although you are supposed to be able to order a burger without a bun, some have done this and used lettuce to hold it! Wetherspoons have gluten free menu and some other chains.  Its also good to travel with some safe snacks. Protein bars, fruit, nuts etc. Enough so you don't feel tempted to risk something which isn't safe. some good tips here one final point, at the moment you are in worst of all worlds. All he hassle of the diet, none or not enough of the good healing feel. You need to get the diet cracked and eliminate gluten entirely, eat lots of nutrient rich foods and kick start the feeling good vibe, because once you get that all of it, the diet, the reading of labels, the awkward conversations etc all become 100 times easier. You just need that connection between the diet and feeling good again. Get that and your on your way. all the best matt
    • Hi guys, Hope your all good just looking for a bit of support and information..How long do you take to recover from a glutening through cc?  been gluten free free for about 9 months awaiting a biopsy to confirm celiac. Have been recovering well so far but accidentally got glutened through cross contamination about 5 days ago. Brain fog and neurological symptoms have subsided but still having gi issues - mainly D and feeling pretty weak.   Just looking for some support that this will heal as when this happens I always have anxiety that I won't recover.    I have been been eating whole foods, no dairy etc    just want to know there is light at the end of the tunnel.  Fi    xxx
    • Hello everyone My story is pretty simple. I've had massive digestive issues since I was 16. I'm now 52. My late Mother and her Mother had both also suffered their entire lives, yet the condition was never diagnosed in either of them. Perhaps the worst symptom for me initially was huge distension (Bloating) which would often strike late evening, 6 hours or so after eating, when I would bloat like I was 9 months pregnant before expelling huge amounts of air via very loud and long burps, that would last up to 8 hours, keeping me awake all night long. Acid reflux would sometimes occur and my tummy would always sound like a washing machine on full cycle. At the age of 22 I began a career as a Police officer, however due to this debilitating condition having such a detrimental effect on my health, I was forced to retire on a ill health pension in 2005, in part also due to massive daily headaches, hemiplegic migraines and total loss of energy etc etc. I underwent many tests in my life, including cameras in and out of most cavities, yet nothing was ever found. In short, I lived my life afraid to eat, afraid to go out in case I needed to loo quickly and everything else associated with the condition, my Doctor had labelled as simply IBS. As I got older, my symptoms worsened, I now have a permanently white tongue (Attractive), swollen submandibular glands, almost constant abdominal pain, total loss of energy where even walking upstairs becomes almost impossible, night sweats, dry eyes, facial dryness above eyebrows and a constant feeling in my tummy, like I have swallowed toy building blocks, covered in acid. My blood tests always reveal inflammation, yet all the specialists I have ever seen, cannot find the source. I even paid £2500 for a pet scan of my swollen lymph nodes, due to concerns I may have had Lymphoma, as all the symptoms were there, but fortunately it was negative. I was recently diagnosed with S.I.B.O and Addisons Disease (due to low blood pressure and dizziness), along with Fibromyalgia due to muscle pain. I've been on Codeine tablets for over 10 years which I'm sure don't help, and I recently stopped taking some nasty meds including Gabapentin and similar neuro style meds. Yet, I had never been tested for Celiac or Gluten intolerance during all this time. Never, which I find shocking. Two days ago, I purchased a home test kit for gluten which gave a strong positive result. To double check the result, I've booked a blood test with my Doctor for confirmation. What really infuriates me, is that if I had been tested right at the beginning of all this, I could have lived a near normal life, kept my career and reduced the hellish suffering that this nasty condition brings. I now wonder how much damage has been caused to my body. I often see undigested food in my waste, I often smell the acrid stench of bile and see either orange, bright green or even near black stools. Thank God, for the simple home test that may be about to change my life and stop me feeling like some kind of hypochondriac due to the amount of different issues experienced by the body, all decreasing and reducing a good quality of life. I just wanted to outline my story in the hope that it may help others who may still be undiagnosed but who have never been tested for Celiac or gluten intolerance.  My regards and best wishes to you all Marcos
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