Gluten_free_01

I’m getting tired of reading about fructans. Let’s say someone thinks they might be gluten sensitive. They get tested for celiac and the results are negative. So they remove gluten from their diet and see a huge improvement in their symptoms. If fructans were to blame, wouldn’t they get rid of the symptoms only after removing BOTH wheat, rye and barley AND other high-fructan foods such as onions, garlic, Brussels sprouts, cabbage, broccoli, artichoke, asparagus and leeks?

I'm glad that research is being carried out but looking at GI symptoms only is not enough.. 'We performed a double-blind crossover challenge of 59 individuals on a self-instituted gluten-free diet, for whom celiac disease had been excluded. The study was performed at Oslo University Hospital in Norway from October 2014 through May 2016. Participants were randomly assigned to groups placed on diets containing gluten (5.7 g), fructans (2.1 g), or placebo, concealed in muesli bars, for 7 days. Following a minimum 7-day washout period (until the symptoms induced by the previous challenge were resolved), participants crossed over into a different group, until they completed all 3 challenges (gluten, fructan, and placebo). Symptoms were measured by gastrointestinal symptom rating scale irritable bowel syndrome (GSRS-IBS) version. A linear mixed model for analysis was used.' https://www.ncbi.nlm.nih.gov/pubmed/29102613

Dark humor! ..... Take it seriously, Matt.

I have to admit I’ve read their press release twice and I still don’t understand if their aim is to differentiate celiac disease patients and NCGS patients or differentiate celiac disease patients and everyone else (including NCGS people). In other words, I don’t understand if they would be able to diagnose only celiac using the new method or diagnose both celiac and NCGS. Press release: http://www.immusant.com/docs/ImmusanT UEGWeek Late Breaker Data_FINAL.pdf This paragraph is particularly confusing to me: 'The presentation, “Increase in plasma interleukin(IL)-2, IL-8, and IL-10 from 2 to 6 hours on oral gluten challenge differentiates between celiac disease (CeD) and non-celiac gluten sensitivity (NCGS) in patients on gluten-free diet (GFD)” detailed results from a study done in collaboration with the University of Oslo that characterized changes in circulating levels of cytokines caused by gluten in CeD and NCGS patients. Specifically, the study evaluated IL-2, IL-8 and IL-10 in plasma after gluten ingestion in CeD and NCGS subjects on GFD using highly sensitive assays. Gluten induced mucosal changes in 5 of 19 treated CeD patients and mobilized T cells in 12 of 15 evaluated patients, while no signs of symptomatic response were seen in “gluten-sensitive” patients. Elevations in IL-2, IL-8 and IL-10 were significantly increased in CeD compared to NCGS, with IL-2 being the most sensitive.'

I’m glad I’m not the only one who feels this way Nice story btw. Even though I’m not a fan of Star Wars/Lord of the Rings (sorry ), I get the point. I can’t even imagine how I’d explain the diet restrictions to a child. ‘You can’t have this, you can’t have that..’ I had to explain this whole thing to myself in a way.. When I was a child, being mainstream was important to me. I was collecting Kinder Surprise toys etc. Fortunately, I don’t care now that I’m older. Niche products are fine.

"too many times it comes back as a false positive" I didn't say that actually I was just quoting Lizzy (what her doctor said). Anyway, as we said, your doctor is not right, Lizzy. False positives are quite rare. It seems like he/she is unwilling to test you. Sometimes doctors don't take this condition seriously unfortunately. "Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac)" http://www.cureceliacdisease.org/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives/

This means your issues might be related to gluten sensitivity/celiac. I'm sorry your doctor has this attitude. They don't seem to be very helpful. Can you find another doctor or go to a lab and order the tests yourself? Note: You have to eat at least half a slice of bread for 12 weeks prior to testing. http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ And even if you test negative for celiac, you can have Non-celiac gluten sensitivity (=NCGS). Based on your symptoms, I'd also consider Lupus (=an autoimmune disease). https://resources.lupus.org/entry/common-symptoms 'Common symptoms of lupus Because lupus can affect so many different organs, a wide range of signs and symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease. The most common symptoms of lupus (which are the same for men and women) are: Extreme fatigue (tiredness) Headaches Painful or swollen joints Fever Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume) Swelling (edema) in feet, legs, hands, and/or around eyes Pain in chest on deep breathing (pleurisy) Butterfly-shaped rash across cheeks and nose Sun- or light-sensitivity (photosensitivity) Hair loss Abnormal blood clotting Fingers turning white and/or blue when cold (Raynaud’s phenomenon) Mouth or nose ulcers Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases. You play an important role in helping your doctor manage your disease. Listen to your body, ask questions and stay involved.'

Have you ruled out Dermatitis Herpetiformis? 'Dermatitis herpetiformis is an itchy, blistering skin disease that stems from intestinal gluten intolerance. The rash usually occurs on the elbows, knees, torso, scalp and buttocks. Dermatitis herpetiformis is often associated with changes to the lining of the small intestine identical to those of celiac disease, but the disease may not produce noticeable digestive symptoms. Doctors treat dermatitis herpetiformis with a gluten-free diet or medication, or both, to control the rash.' https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220 'Dermatitis herpetiformis (DH) is an itchy, blistering skin condition that’s a form of celiac disease. The rash usually occurs on the elbows, knees and/or buttocks, and is characterized by its bilateral nature; both knees (and/or both arms) are affected, seldom just one. Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease. Unless otherwise specified, the information pertaining to celiac disease also pertains to people with DH. In addition to following a strict gluten free diet, DH is also commonly treated with a medication called Dapsone.' http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/ You're welcome I know that living with the uncertainty can be difficult - I'm in a similar situation.. That's a good decision.

I can relate. Tbh I wouldn’t rely on the blood tests results for the following reasons: 1. approx. 10 percent of celiacs are seronegative https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf 2. opinions vary as to how long a gluten challenge should last – as you said, according to Coeliac Australia, it’s 6 weeks, but e.g. University of Chicago – Celiac Disease Center recommend 12 weeks. http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ 3. I personally don’t think the blood tests are good enough to be able to catch celiacs whose intestinal damage is not that severe (Marsh grade 1 or 2). 'It is important to keep in mind that tTG antibody levels fluctuate and depend on the degree of intestinal damage. Thus, a negative test is possible in a patient with minimal pathology (ie, Marsh I lesion) and does not necessarily rule out milder forms of celiac disease. Repeat testing may provide significant clinical insight and help decide the appropriate timing for a biopsy or monitoring dietary compliance.' https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088693/ Also, this thread came to my mind. I hope Celiac’s Wifey won’t mind if I quote her. 'Asking because my kids are at risk. Half my husbands family are biopsy-confirmed celiacs - but most with weird paths to diagnosis - he was confirmed through DH skin biopsy / his sis never had a positive blood test but had tons of Marsh III lesions at time of endoscopy / first cousin had one equivical positive blood test as teen, when no damage was found on initial endoscopy doc advised her gluten was fine -- six years later new endoscopy showed major damage. Curious if there is a tie between genetic types. They haven't all been gene typed but we know my husband is DQ7' So my advice would be don’t rely on the blood tests and stay gluten-free. In my opinion, improvement in symptoms on the gluten-free diet is a proof in itself. PS: I couldn't open the attachments unfortunately.

No, it's definitely not in your head. The doctor doesn't know what she's talking about - ignore her and act as if the test results were positive. NCGS is a real thing.

I'm sorry, I'm working on 2 important projects now and the deadlines are tight, so I won't be able to chat. However, if you have any questions, you can ask here on the forum - there are many experienced people who have a lot of knowledge. Or you can read other discussions; search the website for keywords. I hope you feel better soon.

I agree with Matt. Kirsty, the decision is up to you, of course..

It depends.. It could be the only solution because when we are gluten intolerant, it can impact us in many different ways. Yes, even female hormones – PMS, menstrual cycle problems, fertility problems, pregnancy complications, miscarriage etc. Let us know what the holistic doctor says.. Normally, you would want to rule out celiac first and then consider NCGS. I hope you have been tested properly – i.e. the full celiac panel etc. Some doctors don’t know much about it and they would only run one blood test instead of seven, for instance. My withdrawal lasted for about a month. If you tend to get hypoglycemic, try to eat regularly. But you may get some withdrawal symptoms anyway – that’s just the way it is. If you’re gluten intolerant, it’s like a price you have to pay so that you can feel much better and healthier for the rest of your life.. And you’re right about other possible deficiencies – many people with this condition do have some vitamin/mineral deficiencies and take supplements.

Kirsty, in my experience, being ‘gluten light’ is not helpful. I think it doesn’t make any sense tbh – it does more harm than good. The withdrawal period is very different from being gluten-free long term. The withdrawal symptoms can be extremely unpleasant but they are temporary! Let’s say 4-6 weeks. I personally was feeling like a drug addict or an alcoholic in rehab at the time. I was having all kinds of withdrawal issues – one of them was extreme hunger and unusual stomach cramps caused by hunger. I had to eat approx. every 2 hours – otherwise I would get very dizzy and lightheaded. It felt as if my body was finally getting the types of foods it needed (= gluten free) and wanted these ‘right’ foods constantly. The fact that my body viewed gluten as a drug and was addicted to it was a proof in itself for me that I am gluten intolerant. Let’s say I wouldn’t eat any potatoes for 2 or 3 weeks – nothing would happen. Often the types of food we love the most, crave and can’t live without are the very types of food we are intolerant and addicted to. If you’re not a diabetic, the hypoglycemia could resolve completely on the gluten-free diet. My advice would be read about gluten withdrawal and don’t let it discourage you.

You've just realized you have a health condition which can't be diagnosed formally. You haven't felt ok for quite some time, but didn't really know why. You were thinking it was just stress. But then there was a couple of weeks which weren't particularly stressful, so you were wondering 'why am I feeling worse'? You felt like there was an underlying cause you were unaware of. You knew you were meant to figure it out and finally did. Advice: Doctors don't know much about this condition, so don't rely on them. Do your own research. Since you don't have an official diagnosis, don't be surprised if people don't understand. They may even think it's just a product of your imagination... Well, it's not your duty to explain the details to everyone. And it's not your obligation to describe all the positive effects the gluten free diet brings about to those who are (and always will be) sceptical. This is not an argumentation/persuasion skills training. You're not a lawyer or a salesperson. The situation may be different in 5/10/15 yrs... Who knows? There is research ongoing. Maybe people will be more aware, maybe gluten free restaurants will be as common as other types of rest., maybe potential negative effects of gluten won't be a kind of a secret anymore. Don't feel guilty about not being able to realize this sooner. There are 'stakeholders' whose interest is definitely not raising the awareness about this issue. And this has an impact on our society. Their main interest is making profit. Gluten products are profitable, to say the least. On the contrary, the gluten-free diet - the cure - is not currently viewed as a product that much. However, from a marketing perspective, it could be seen as a product. There is potential. There are unrealized business opportunities. There is a gap in the market. Who knows what the future holds? Carry on with your life and try to make the best out of this situation.