What Else Can I Eliminate? I Still Don't Feel Better.

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So I don't mean to be like a downer and I mean this as just not a bad way.

But like the oxalate diet I was looking into it and soy is a high oxalate and I eat a lot of soy, not because I think it's healthier but because I'm a vegan. Peanuts also they were saying is a high oxalate food, and I eat them for protein.

I don't mean to sound complicating or anything, I really appreciate the feed back. I just... don't know what I'll eat for the time I am watching my oxalate intake. You know?

I don't know why, but like when I stopped eating gluten, I didnt mind, it was easy same with dairy and not eating meat. Just... I'm not sure.

The constant urination, is definately annoying. If anything I'd like to fix that.

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So I don't mean to be like a downer and I mean this as just not a bad way.

But like the oxalate diet I was looking into it and soy is a high oxalate and I eat a lot of soy, not because I think it's healthier but because I'm a vegan. Peanuts also they were saying is a high oxalate food, and I eat them for protein.

I don't mean to sound complicating or anything, I really appreciate the feed back. I just... don't know what I'll eat for the time I am watching my oxalate intake. You know?

I don't know why, but like when I stopped eating gluten, I didnt mind, it was easy same with dairy and not eating meat. Just... I'm not sure.

The constant urination, is definately annoying. If anything I'd like to fix that.

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^Well, I am very certain that your problem is with oxalates - almost 100% from what you have said. In fact, I think that many of the people here who are claiming problems from corn and soy are actually problems with oxalates. I though the same for a while until I figured it out.

You say you are a vegan - that is fine, I don't want to tell you that there is something wrong with that. But, you don't have to be a vegan. You can continue to eat foods which are causing chronic problems for your body at the moment like soy and the others or I'll post some stuff that you should be able to eat. Maybe you can just eat some meat here and there for now - I don't know your reasons for being a vegan but...

Low-Oxalate Diet

Low Oxalate Foods

Recipes/Food Lists - Low Oxalates

So, I guess dairy is out too right? Can you get by with going just vegetarian for now or do they not eat dairy either? I mean not all animals are raised on factory farms - there are organic farms and such. Just imagine if plants, animals and people all had the same rights - we could only eat rocks. Sucks to think about that. Just having fun, forget that, I know you are serious about not eating animal stuff.

But essentially there are some vegetables(some lettuce (romaine, iceberg I think), cauliflower, broccoli, I've been okay with small amounts of orange/yellow tomatoes), herbs and a couple nuts and beans (black-eyed peas, split peas and mung beans). Now, once you get your daily oxalate content down, you can get away with small amounts of Medium Oxalate foods but it might be possible for you to eat Low and Medium now - it just depends on you. I seem to be very sensitive to oxalates at the moment but those symptoms we talked about are gone 75% of the day now only occurring when I eat to much of something with medium content. Again, you might only be unable to eat foods high in oxalate, find some stuff of low to medium content and swap them out for soy. See if that helps. Eat Black-eyed peas and split peas instead of peanuts for Protein and Flax seed for folate. You'll need some B12 and Vit D since you aren't eating meat and dairy. See what happens. Just try it for a couple weeks.

They are working on a probiotic containing Oxalobacter Formigenes (think I spelled that right) which is a natural bacteria that breaks down oxalates and present in the digestive tracts of most people. Things like Celiac can destroy the bacteria cultures in the intestine which could be one of the reasons why you and I have problems with these foods. This probiotic will help re-culture the intestine.

Ultimately, what you do is your decision. Eat some stuff that you may not want to at the moment(such as meats/dairy) and eliminate soy/peanuts, continue taking anti-inflammatory meds which may cause severe problems down the road or just deal with the pain. Did you say you were taking calcium supplements? Continue to take that as it locks up oxalic acid (oxalates) into calcium oxalate before it can enter the blood-stream. Just drink lots of water to flush that out.

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Have you been tested for bladder infection and/or kidney infection? Just an idea. I would definitely drink more water, 8 glasses/day and don't forget extra salt cuz the water w/o salt is not good either. Someone here correct me but think we need 1/3 tsp. salt daily and when you cut out all processed food you don't get enough unless you add it.

In my case I have very low blood pressure and get light-headed w/o making a point of adding salt to food or eating salted nuts.

There's a ton of nuts and nut butters out there so you don't have to eat peanuts for protein. I eat a alot of almonds and almond butter, plus chopped walnuts, sprinkle them on my gluten-free waffles.

Also I'm inclined toward one of the other posters who suggested adding a little meat or at least eggs to your diet. Healthy people can get sufficient protein being vegan but you have enough health problems and are so limited in foods it may be that you are one who needs small amounts of meat. If you're concerned about how animals are treated you can buy free-range eggs pretty much everywhere now; organic meats are also widely available. I don't want to disrespect your choice though, if you have a strong conviction about eating vegan then I'm sure you'll find your way.

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I am shocked! If Rice Dream contains gluten for sure then that is where I have been glutoned from 2 weeks ago! I have wracked my brain trying to figure out where. For sure gluten ? Why?



why do you use rice milk if you re concerned about the gluten?? I use almond and goat milk. I use the Pacific brand of almond milk (from Trader Joes) but I think Whole Foods has it too. It doesn't have all the crap in it like the other brands. Just because you are watching the gluten/wheat-- doesn't mean you can't be sensative or allergic to other stuff like MSG or regular table salt. I use only sea salt.

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Everyone has made a lot of good suggestions, but I just wanted to add some products that I like that are safe.

I am currently off eggs, dairy, soy and gluten, so I can relate to your troubles. I do eat meat though. When I was still eating all these things I used to get those stabbing pains in my chest too. My doctor freaked out and made me get an EKG, but it was normal. When I cut out all those things, the pains stopped. If you were drinking Rice Dream and getting glutened before, that could be the problem. You might want to check all your condiments and stuff for hidden gluten.

If you are concerned about getting enough protein, health food stores sell those big jars of protein that you stir into a shake. I got some that is made from rice protein and it's processed without chemicals. I can't remember the name but it comes in a white plastic jar with a brown lid (it's chocolate flavor). I mix this with Westsoy rice milk in the morning and have a piece of fruit with it.n Also keep in mind that most Americans eat twice as much protein as is really necessary. I started logging my food in a program that tracks the nutrients, and it's not really that hard to get enough protein to satisfy your body's requirements. Just keep in mind it should be complete protein, i.e. a good balance of amino acids.

I don't use margarine because it usually has soy. Instead I got Spectrum shortening which is just palm oil, and it has no trans fat. Coconut oil was a good suggestion too, but I don't like the texture as much. Avocadoes are also a great way to add some texture and fat to vegetables or a meal. Olive oil also.

As for potatoes, the taro suggestion was good, but if you just need something carby and delicious, consider plantains as well. They are like a banana, but more starchy. I'm not sure if you'd be able to get them fresh all the time, but there are plantain chips available.

If you cook at all, making bread with bean flours can be helpful, although the taste is stronger than other gluten free flours. If you look in Indian food stores, they usually have a variety of flours you can use, like millet, rice and bean flours. It might be worthwhile to learn an easy recipe for flatbread. Usually it's just flour, oil and water and a little salt. I know it's hard to be able to just grab something and go when you have so many dietary restrictions, so I always keep something like that around.

OK just another random tip... I discovered a lot of great websites about the raw food diet. Although I'm not anywhere near that extreme, it helped me discover a lot of interesting and delicous foods that I could add to my diet so I wouldn't feel deprived while cutting out all those other things.

I hope you feel better soon!

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Have you been tested for vitamin, mineral and essential fatty acid deficiencies? With your limited food categories that could be a real problem for you. Taking multivitamins isn't enough if you're already deficient and some vitamins depend on other vitamins for good absorption (i.e. a vitamin D deficiency hinders calcium absorption and vitamin D deficiency is a very common problem). Maybe that's why you're peeing out calcium?

Either way, it's worth discussing with your doctor if you haven't been tested for deficiencies yet.

Signs of Fatty Acid Imbalance (from the book "Smart Fats")

Dry skin


Frequent urination


Attention deficit

Soft nails

Alligator skin


Lowered immunity



Dry, unmanageable hair

Excessive thirst

Brittle, easily frayed nails


"Chicken skin" on backs of arms

Dry eyes

Learning problems

Poor wound healing

Frequent infections

Patches of pale skin on cheeks

Cracked skin on heels or fingertips


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Wow, lots of great advise! Did anyone suggest adding coconut milk to your diet? It's pretty safe and easy. I use it in place of butter in recipes or half it with water to use as milk. Much healthier than soy. It also has a good protein level and is easy to find in the ethnic foods section of any grocery store for about $2.00 a can.

Also read up on corn. It sounds like some of your problem foods contain a lot of corn.

The elimination diet is really easy and the safest way to figure this all out.

best wishes

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May I make a few suggestions? I went through all of this as well.

I think you need to focus on repairing your intensitnal track, and the first place to start with this is to eliminate ALL processed foods for a while. If you have blood sugar problems and don't eat meat (I used to be a vegan too and didn't eat meat), you really need to be sure you're getting a lot of protein with each meal, and not processed protein like soy products. For the dirty dozen vegetables/friuits (google to find this list) eat these organic, it will really help boost your immune system.

Next, I can't stress how much this helped me. Get on a GOOD probiotic and digestive enzymes and get away from the antiacids. I went through the same thing and it only gets worse unless you address the underlying issues, which probiotics and enzymes will help greatly with. I suggest checking our Dr. Brends Watson's line . . . she has many wonderful products to help replenish intestinal tracks and her probiotics are awesome, albeit a bit pricey.

May I also suggest taking a whole food supplement and not snthethic ones. You will be able to absorb them better and you can take them on an empty stomach because they're just food...no more stomach upset, ever! I take the New Chapter brand (more reasonable on vitacost.com). I agree with the others, take Omega 3 supplements and take lots of vitamin d (i take 5,000 IUs a day)...it helps with inflammation.

I really hope this helps. It breaks my heart to hear your pain...I've been there before but now I'm super healthy and strong!

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Hi Brianna,

Given what I've read so far, I'd really suggest you take a look at the GAPS (Gut And Psychology Syndrome) diet. Its specific focus is on rebuilding the correct healthy flora balance in your gut. Once that is done, as some people have pointed out already, a number of other issues may resolve themselves.

As a vegan though it may create a problem for you as it is heavy on the meat and protein, but I have resolved that by getting locally raised grass-fed organic eggs, chicken, pork, and beef from local farmers. On the positive side once you move past the first couple of months you could look at reducing the meat intake as long as you continue to get sufficient non-processed animal fat into your diet.

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Thank you for your help! Now I am beginning to understand more about this disease.  
    • Becca4130, Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold. I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone. This verywell article explains it well. https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571 depending on your ethnicity you might not type out well depending on where your ancestors are from. see their (verywell) paragraph about DQ8 variability by regions of the world. Be your own advocate your nutritionist is right to be cautious. see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell. But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing). https://www.ncbi.nlm.nih.gov/pubmed/21484038 In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test. quoting CONCLUSIONS: "In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group." Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types. You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit. You won't have to get  a doctor's confirmation of what your body already knows. Here is one more research article but a little older so there is probably newer research that might replace it. that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease" https://www.ncbi.nlm.nih.gov/pubmed/11922565 I hope this is helpful. ******This is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,  
    • I would put my money on a latex allergy or intolerance.  You can not even bring latex balloons into the hospital anymore, just the Mylar ones.  Did you call to confirm the “gel”.  It makes not mention of a gel on the Amazon or Costco website.  
    • What's got me thinking I might still have to worry about celiac, even though I've been gluten-free for 4 years: https://scdlifestyle.com/2015/11/the-celiac-disease-diet-why-gluten-free-isnt-working-and-what-to-do-instead/ 
    • The test I took said less than 20 U/mL is normal. I had 8. Which I know is less than 20 by far. But all my other levels were less than 1. Maybe I'm just psyching myself out looking for an answer anywhere.
      I guess what I'm wanting to know is if a blood test is completely useless without gluten in the body, or if any sort of elevation can be interpreted as something? I'm just kinda mad that no one told me it only really works when you have been eating gluten.
      I know (from more research) that a biopsy of your small intestine can let you know, too, but that's so expensive, and without a positive blood test I don't think a doctor would refer me.
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