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  1. Have they checked you for Crohn's - Inflammatory Bowel Disease which can affect your digestive tract anywhere from the mouth to the anus? Pancreatic problems can be a side feature of this disease. An endoscopy [through the mouth into the small intestines] can only go so far into the small intestine. Sometimes, a Pill-cam [pill + camera that is swallowed and is recorded as it travels throughout the intestinal tract by a belt you wear for a day or two] is the only way to see all of the small intestine. Sever pain like you have been having is NOT a part of Celiac. However, you could also have celiac disease or gluten intolerance along with another digestive disorder. I sure wish you luck in getting a diagnosis real soon so you can start getting well! Congratulations on the new baby!!!!


  2. Since you are "self diagnosed", kind of like me, there are a couple of other possibilities you might want to check out that could explain some of the other food sensitivities you are noticing. A gluten free diet would make a significant difference in 2 other digestive disorders that I can think of:

    [1] FRUCTOSE MALABSORPTION [and a more serious condition called Hereditary Fructose Intolerance] : Generally these are conditions where fructose [fruit sugar]is not digested properly. Wheat contains many components, one is a starch called a Fructan [made up of a long chain of fructose molecules, one after the other, with an glucose on the end]. So, FM or HFI folks eat a gluten free diet to avoid Fructans rather than the gluten. They are also sensitive to fruits and veggies, some types more so than others, depending on the amount of sugar in each one. All sweets [cakes, cookies, candies, sodas, etc] are problematic too because sucrose [white table sugar] is ½ fructose + ½ glucose. Also, FM is frequently seen along with any other digestive disorder. There is a breath test to diagnose FM, while HFI is diagnosed by liver biopsy or a sugar induction under medical supervision [both rather invasive procedures].

    [2] INFLAMMATORY BOWEL DISEASE [iBD] which is made up of two main diseases, Crohn’s [CrD] and Ulcerative Colitis [uC]. Gluten, dairy, and sugars are frequently sighted as triggers that initiate “flares” [digestive symptoms similar to being “glutened” in celiac disease] – so dietary changes are often recommended, including a gluten free diet. IBD can be mild to sever, with many food triggers – sometimes raw fruits + veggies, sometimes other foods, and unknown non-food triggers. Flares can be episodic or continuous – there are many variations in presentation, and is somewhat difficult to diagnose because of this. Intestinal biopsies, sometimes along with other intestinal investigations, are necessary to diagnosis IBD. Associated conditions include vitamin deficiencies, osteoporosis, arthritis, peripheral neurologic problems, etc.

    So…you can see how confusing it can get to find a diagnosis when you realize that a gluten free diet helps, but isn’t the whole answer. Also, to complicate things more, it is possible to have celiac disease or gluten intolerance along with either of the two diseases mentioned above.


  3. I tend to have this too, but mine is more triggered by sugars...especially upon the first sip of soda. It's more like a throat muscle spasm; definitely NOT a burp. It's like my body is saying, "NO WAY!" to the sugar. [besides the gluten sensitivity, I am Hereditary Fructose Intolerant] Anyway, since the trigger is gluten for your little one, perhaps it is just a reflection of the celiac disease..a warning of 'incoming' gluten and the body is rejecting it. My experience has been that doctors tend to be clueless about this throat thing. I don't know if an upper endoscopy would pick it up since it is gluten induced.


  4. I used to get these frequently before starting a gluten free + dairy free + low sugar diet. About that time I was told to add Bronson's "Super B" vitamin complex and it has really made a difference. Now I hardly ever have mouth ulcers...and the few times they have popped out, they were much milder and didn't last near as long. So, I would suggest talking to your doctor about adding this. Digestive problems usually lead to poor vitamin absorption in the small intestine, so added vitamins and minerals are important for optimizing health.


  5. Yes, other diseases can cause villi blunting:

    My link

    "Endoscopic findings of the descending duodenum associated with celiac disease may include absence of folds, scalloped folds, visible submucosal blood vessels, mucosal mosaic pattern, and absence of villi. At histology, chronic inflammation of the duodenal mucosa with blunting or absence of villi accompanied by crypt hyperplasia is characteristic.

    Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data."


  6. Here's a significant research paper of interest to all of those who have had a negative biopsy. Another reason not to fully trust negative biopsies is (1)labs miss read them 20% of the time, according to the attached research report, (2)the doctor may not take enough samples -8 are recommended,(3) or there are not enough taken in the right places, as damage can be spotty.

    Variability in small bowel histopathology reporting between different pathology practice settings: impact on the diagnosis of coeliac disease.

    Source: J Clin Pathol. 2011 Nov 12. Celiac Disease Center at Columbia University Medical Center, Division of Digestive and Liver Diseases, Department of Medicine, Columbia University, New York, New York, USA.

    ABSTRACT

    Background and Aims - Coeliac disease (celiac disease) diagnosis requires the detection of characteristic histological alterations of small bowel mucosa, which are prone to interobserver variability. This study evaluated the agreement in biopsy interpretation between different pathology practice types.

    Methods - Biopsies from community hospitals (n=46), university hospitals (n=18) and commercial laboratories (n=38) were blindly assessed by a pathologist at our institution for differences in histopathology reporting and agreement in diagnosis of celiac disease and degree of villous atrophy (VA) by κ analysis.

    Results - Agreement for primary diagnosis was very good between this institution and university hospitals (κ=0.888), but moderate compared with community hospitals (κ=0.465) or commercial laboratories (κ=0.419). Diagnosis differed in 26 (25%) cases, leading to a 20% increase in celiac disease diagnosis after review. Among those diagnosed with celiac disease by both institutions (n=49), agreement in degree of villous atrophy (VA) was fair (κ=0.292), with moderate agreement between the authors and commercial laboratories (κ=0.500) and fair with university hospitals (κ=0.290) or community hospitals (κ=0.211). The degree of VA was upgraded in 27% and downgraded in 2%. Within different Marsh score categories, agreement was poor (κ<0.0316) for scores 1 and 2, both missed at other centres, and fair or moderate for scores 3a and 3b. Information regarding degree of VA and intraepithelial lymphocytosis was lacking in 26% and 86% of reports and non-quantifiable descriptors, eg, 'blunting' or 'marked atrophy' were prevalent.

    Conclusions - celiac disease-related histological changes are underdiagnosed in community-based hospitals and commercial pathology laboratories. Because incorrect biopsy interpretation can cause underdiagnosis of celiac disease, greater celiac disease awareness and uniformity in small bowel biopsy reporting is required among pathologists.


  7. I, too, recently gene tested with Prometheus labs and was told that I am negative for both DQ2 + DQ8 - so have an "Extremely Low" chance of developing Celiac Disease. Well, I am, for sure, sensitive to wheat, rye, barley and oats; also extremely Dairy Intolerant to both factions [lactose + protein], plus have Fructose Malabsorption. In any event, a gluten-free diet has helped me immensely! Wither it is true Celia Disease, Crohn's [inflammatory Bowel Disease], or the fructans, rather than the gluten, in the grains that I am reacting to, is an unanswerable question. But, does it really matter when the diet works? I have classic GI symptoms when I get off the gluten free diet.


  8. I sure hope that this in vitro test works and becomes standard practice. It will make it it sooooo much easier to diagnose! I am one of those "old folks" who slipped through the net before Celiac was even on the radar and diagnosed with an elimination diet and challenge. Since I get so ill when exposed even slightly, it's not recommended to do another challenge in order to do biopsies at this late date. So, when my daughter was recently diagnosed with similar problems, I decided to have the genetic test to help clarify her situation. But, surprise-surprise, according to Prometheus labs, I don't have DQ2 or DQ8, so they say very little chance it's Celiac. I'm not convinced they have all the answers yet, so will stay gluten-free + DF ..... and healthy in the meantime.


  9. WOW! This is great news! Hopefully it will be available real soon to those of us who are asked to do a gluten challenge so that biopsies can be done:

    Patients who do not get a confirmed celiac diagnosis from standard tests could obtain one from an in vitro gliadin challenge, in which biopsied duodenal mucosa are tested using the toxic part of wheat gluten called gliadin, according to a study in the American Journal of Gastroenterology. University of Salerno researchers said the challenge method is helpful for patients who are on a gluten-free diet prior to the biopsy because they do not have to revert to eating gluten foods to achieve the diagnosis.

    In Vitro Gliadin Challenge: Diagnostic Accuracy and Utility for the Difficult Diagnosis of Celiac Disease

    The American Journal of Gastroenterology , (27 September 2011) | doi:10.1038/ajg.2011.311

    Raffaella Tortora, Ilaria Russo, Giovanni D De Palma, Alessandro Luciani, Antonio Rispo, Fabiana Zingone, Paola Iovino, Pietro Capone and Carolina Ciacci

    Abstract

    OBJECTIVES: Diagnosis of celiac disease is difficult when treatment with gluten-free diet (GFD) is started before diagnosis and/or when the results of tests are inconsistent. The objective of this study was to evaluate the in vitro gliadin challenge.

    METHODS: The study cohort included patients without celiac disease (negative controls, n=57), patients with celiac disease (positive controls, n=166 untreated and n=55 on GFD), and patients with difficult diagnosis (n=59). All patients underwent endoscopy for collection of duodenal samples, which served for the diagnosis of celiac disease and for the in vitro evaluation of the gliadin-induced mucosal expression of seven inflammatory markers: PY99, ICAM-1 (intercellular cell adhesion molecule), HLA-DR, CD3, CD25, CD69, and transglutaminase 2 IgA. Diagnostic work-up for celiac disease included the search of specific serum antibodies. Patients of the difficult diagnosis group were asked to stop GFD for repeated search of these antibodies under untreated conditions. The area under the receptor-operated curve (ROC) was used for statistical analyses on accuracy.

    RESULTS: HLA-DR had the highest accuracy for celiac disease diagnosis in analyses on negative controls and positive controls also excluding patients on GFD (area under ROC=0.99). Accuracy of test did not increase combining data of HLA-DR with data of other markers. Findings were similar in the 39 patients of the difficult diagnosis group undergoing the search celiac disease-specific antibodies under untreated conditions.

    CONCLUSIONS: The in vitro response of mucosal HLA-DR to gliadin is an accurate tool for the diagnosis of celiac disease also in patients with difficult diagnosis.

    My understanding of this is that: first, they did biopsies on each of the three groups. Then, they had the "hard to diagnose" group drop the gluten free diet [after the biopsies]. It was done this way so that the blood antibody tests could be done while on a GFD, in order to cross check that these patients are positive on both tests. It was a scientific way to verify the validity of the in vito testing. Furthermore, the abstract of the article and the preceding paragraph [starting with "Patients who do not get confirmed..."] came from from Digestive Health Smart Briefs, by Craig H. Lubin, MD and the American College of Gastroenterology. So, their conclusion on the success of in vitro testing as a diagnostic tool for possible celiac disease in patients who are already on a GFD, is the conclusion stated by the scientists and doctors, not my conclusions. That is why this is so fantastic! Hope this helps. [see:[url=https://mail.google.com/mail/?shva=1#inbox/133022e2dcfa3ca7]


  10. WOW! This is great news! Hopefully it will be available real soon to those of us who are asked to do a gluten challenge so that biopsies can be done:

    Patients who do not get a confirmed celiac diagnosis from standard tests could obtain one from an in vitro gliadin challenge, in which biopsied duodenal mucosa are tested using the toxic part of wheat gluten called gliadin, according to a study in the American Journal of Gastroenterology. University of Salerno researchers said the challenge method is helpful for patients who are on a gluten-free diet prior to the biopsy because they do not have to revert to eating gluten foods to achieve the diagnosis.

    In Vitro Gliadin Challenge: Diagnostic Accuracy and Utility for the Difficult Diagnosis of Celiac Disease

    The American Journal of Gastroenterology , (27 September 2011) | doi:10.1038/ajg.2011.311

    Raffaella Tortora, Ilaria Russo, Giovanni D De Palma, Alessandro Luciani, Antonio Rispo, Fabiana Zingone, Paola Iovino, Pietro Capone and Carolina Ciacci

    Abstract

    OBJECTIVES: Diagnosis of celiac disease is difficult when treatment with gluten-free diet (GFD) is started before diagnosis and/or when the results of tests are inconsistent. The objective of this study was to evaluate the in vitro gliadin challenge.

    METHODS: The study cohort included patients without celiac disease (negative controls, n=57), patients with celiac disease (positive controls, n=166 untreated and n=55 on GFD), and patients with difficult diagnosis (n=59). All patients underwent endoscopy for collection of duodenal samples, which served for the diagnosis of celiac disease and for the in vitro evaluation of the gliadin-induced mucosal expression of seven inflammatory markers: PY99, ICAM-1 (intercellular cell adhesion molecule), HLA-DR, CD3, CD25, CD69, and transglutaminase 2 IgA. Diagnostic work-up for celiac disease included the search of specific serum antibodies. Patients of the difficult diagnosis group were asked to stop GFD for repeated search of these antibodies under untreated conditions. The area under the receptor-operated curve (ROC) was used for statistical analyses on accuracy.

    RESULTS: HLA-DR had the highest accuracy for celiac disease diagnosis in analyses on negative controls and positive controls also excluding patients on GFD (area under ROC=0.99). Accuracy of test did not increase combining data of HLA-DR with data of other markers. Findings were similar in the 39 patients of the difficult diagnosis group undergoing the search celiac disease-specific antibodies under untreated conditions.

    CONCLUSIONS: The in vitro response of mucosal HLA-DR to gliadin is an accurate tool for the diagnosis of celiac disease also in patients with difficult diagnosis.


  11. Help where do I go from here? I was really SHOCKED to see my Prometheus Gene Test results!!!! They said I do not have DQ2 or DQ8 genes, and have an "Extremely Low" chance of having celiac disease. So, I guess my doctors were wrong years ago when they thought I had celiac disease? Of course, this was before anyone knew what they were doing to test for celiac disease - I was diagnosed by an elimination diet and then a challenge. But, I am most definitely gluten intolerant! {the gluten-free diet has made a significant differences] Also, I have had a couple of ER visits with my small intestines almost swollen shut over the years. Now it looks like I will have to buckle under and go see another GI and let them scope me to see if it could be Inflammatory Bowel Disease [probably Crohn's] instead. 1:130 for celiac disease is a lot easier to believe, than 1:3,000 for Crohns. Please advise.


  12. There must be something in colas [coke and Pepsi in particul] that bothers me. But, what it is, I haven;t a clue, I am the only person I know of who has this reaction. It causes muscles in my throat to spasum with a first sip. No, it is not a burp. It's more like my throat squeezes shut as a reaction. I suppose it could be the fructose, since I am fructose intolerant, but other sodas do not do this to me , only colas. Anyone else ever heard of this?


  13. I agree with the others who think you could be hypothyroid because of feeling cold and the lower blood pressure, both key signs of hypothyroid [low thyroid hormone level]. Thyroid problems are a likely companion to celiac disease. Most doctors only do a TSH [Thyroid Stimulating Hormone] screening which really doesn't tell the whole story. In other words, the TSH is only the hormone which stimulates the thyroid to produce thyroid hormone - so, it's not a direct test. Besides that, the American Endocrinology Association, a few years ago, changed the range for "normal" from a high reading of 5.0 to a new high of only 3.0. Many labs are still using the 5.0 range which leaves a lot of folks with symptoms without a diagnosis.

    For example, in my own situation, if I hadn't been able to eventually talk my general family doctor into running the whole thyroid panels [TSH, T4, Free T4, and Free T3 + the antibody panel of TPOAb and Anti-TPO] I would have never found out that I am hypothyroid and have autoimmune Hasimoto's thyroiditis. My TSH hovered between 4.7 to 5.1 for a few years there before I finally got it fully checked out. All that time I was having various symptoms, including joint pain. Three days after starting a low dose of thyroid medication, the joint pain totally disappeared and has never returned! That was 3 years ago. When a follow up sonogram was done after being on medication for a while, my thyroid had shrunk back down to a normal size. My family doctor had been manually feeling my neck and kept telling me that the thyroid felt normal. Only after the initial scan did we know it was enlarged and sitting at an angle that was not easily manually felt. Needless to say, you know your own body best. If you think there could be a problem, insist on the correct testing. And, if your doctor won't go along with it, find a doctor who will.


  14. If maltose is not gluten related...it makes me wonder then if what I am reacting to is the sugars in the candy, since I am also fructose intolerant. I seem to do better with sugars in foods that are balanced between fructose and glucose, as in some fresh fruits. However, I have to really limit denser sugery foods because they quickly make me nauseas.

    Just for history....I have had 3 glucose tolerance tests run over my lifetime and each time have had a "flat-curve" reaction. Also, I was a research subject for a group of scientists and doctors who were studying nutrition's roll in disease. They told me that every time my cells came in contact with sugars, they died...particularly quickly with fructose. Although, I seem to have a problem with all kinds of sugars, even the alcohol-sugars of dietetic foods. So, something in the pathway that either breaks-down or up-takes sugars in the digestive process is not functioning properly in me.


  15. I was afraid you all would tell me maltose wasn't safe. Boo! We have been buying this imported candied ginger in an oriental market. The outside of the packages just say ginger, sugar and tapioca...but today I discovered that the individual wrapped pieces also added maltose to that list of ingredients in very, very small print. I had to get a magnifying glass out just to be sure that it really said maltose. What a bummer! Now I will quit eating any of this and see if my intestines calm down. Something subtle has been bothering me, so guess it is likely the candy. Thanks to all of you for the info. I will certainly try making some on my own. I appreciate the recipe and it doesn't sound too difficult. Heaven knows I have grown addicted to the stuff!


  16. For me it means a delayed reaction. I believe that this is more common with celiac disease than not. It lasts anywhere from 3-10 days depending on how much I accidently ingest.....

    1. Nausea, usually within 30-60 min. or so of ingestion of gluten or dairy

    2. Followed by bloating for a day or more

    3. Then, either loose stools and/or diarrhea for a day or longer

    4. Frequently accompanied by headache, muscle ache, brain fog, and general malaise

    The only thing that seems to help me, when it gets really bad, is to.....

    1. Stop eating solids and drink liquids for about 24 hrs

    2. Followed by a day of liquids, rice, and applesauce

    3. Then, gingerly start back on regular gluten-free + DF foods


  17. Well, this is kind of after the fact....but my husband and I, both having science backgrounds, have become interested in genetic testing more out of curiosity than anything else. [i have been gluten free for about 6 yrs and dairy free for over 40 yrs.] I am looking at both Prometheus Lab and Enterolab's cheek swab genetic tests and wondering which of the two labs is better. There is quite a difference in cost. Anyone with a suggestion?


  18. I also tested Vit D deficient, so my doctor put me on an extra 1 mcg of Vit 3 daily. But, now am only borderline in the normal range.

    We live in Panama a good part of the year which is much closer to the equator than the US, so the sun is much more intense. Unfortunately, because of skin issues, I have to wear total coverage sunscreen + wear a sun hat or carry an umbrella whenever in the direct sun. Even with all this protection, I have a tan line - so you would think that I would be getting enough vit D from sunshine.