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.'

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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: Open Original Shared Link

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.'

6 hours ago, Jmg said:

the 'normal' products which now reside in the Supermarket area I like to call 'Mordor' - the forbidden lands I used to roam, but where evil lurks behind every pack or tin can...

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)"

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7 hours ago, Lizzy18 said:

I went gluten free for about a year and I had only swelled up once while I was gluten-free. (before this diet I was swelling up 2-3 times a month).

This means your issues might be related to gluten sensitivity/celiac. 

7 hours ago, Lizzy18 said:

My doctor also doesn't want to test for celiac, as too many times it comes back as a false positive

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. 

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And even if you test negative for celiac, you can have Non-celiac gluten sensitivity (=NCGS).

7 hours ago, Lizzy18 said:

Has anyone else had these symptoms or heard of them?? Any advice will help!

Based on your symptoms, I'd also consider Lupus (=an autoimmune disease).

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'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.'

1 hour ago, Mat82 said:

itchy head

itchy bottom

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.'

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'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.'

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1 hour ago, Mat82 said:

thanks again. you are all very helpful 

You're welcome  I know that living with the uncertainty can be difficult - I'm in a similar situation..

1 hour ago, Mat82 said:

i think ill just go back to being gluten free, i might get the gene test done and just go with what that says. i dont think its worth all the pain and suffering to get an answer that might not even be correct.

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

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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.

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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.'

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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.    

25 minutes ago, larann78 said:

OUCH. Just got my test results back and I was a "1" on both the IGG an IGA...so, negative. She said she was surprised because she was just sure that the test would come back positive. Ok, cool...so now what? I'm not bloated when I'm off gluten. I don't have stomach pain. I don't have diarrhea. I don't have headaches. I have more energy. She just told me that I can either eat it or not because "gluten intolerance isn't a thing and either you're celiac or you're not". OUCH. Soooooo, it's in my head?

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..

5 hours ago, Kirsty40 said:

Gluten free 01, I totally agree that gluten free light is not good.

I sometimes have to eat every hour. This seems to be related to low cortisol and low female hormones. Maybe also other deficiencies. I don’t think going gluten free is the only solution to this problem. I am sure with the help of a good doctor I will get there.

And yes, so true that the food you get bad withdrawal from is usually very bad for you.

How long did withdrawal last for you?

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.    

5 hours ago, water said:

Regarding doctors, nobody has got any clue. If it is celiac , they may advice you to go gluten free. Other than that they have no idea about any of these type of diseases or conditions. 

The whole thing is sad.

Ok, you're fed up with doctors - but you'll have to communicate with them to some extent if you want a formal celiac diagnosis..

Ennis has given you good advice:

4 hours ago, Ennis_TX said:

Focus on celiac first, then once you get that ruled out then consider NCGS and just try the gluten free diet and see how you feel. Again keeping a Food dairy might find other culprits, a rotating diet removing food for a few days then reintroducing them a few days later then removing again tend to show your if you have intolerance or slight allergies to foods.

As for the immunosuppressants - yes, they will probably affect the celiac test results. I'm not a doctor though. You should really ask a specialist.

'Because of the possibility of false-negative results, these tests need to be performed before the initiation of dietary gluten restriction. Many patients initiate a gluten-free diet on their own before a conclusive diagnosis of celiac disease is reached. In severe celiac disease, the effect on serologies and biopsy findings is likely minimal if testing is performed within two months of initiating a gluten-free diet.15 However, the effect depends on the duration of the diet and how strictly the patient follows it. Persons with positive serology results who have a diagnosis of celiac disease on intestinal biopsy typically have normal results six to 12 months after the introduction of a gluten-free diet. Testing results can also be masked when individuals are taking immunosuppressants.6'

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4 hours ago, water said:

Its the slight sensation loss of sensation in hands and feet that has me worried since it could be start of attaxia.

Could also be peripheral neuropathy - a condition often associated with celiac/ncgs. Or a vitamin/mineral deficiency.

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Every nerve in your peripheral system has a specific function, so symptoms depend on the type of nerves affected. Nerves are classified into:

Sensory nerves that receive sensation, such as temperature, pain, vibration or touch, from the skin

Motor nerves that control muscle movement

Autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder

Signs and symptoms of peripheral neuropathy might include:

Gradual onset of numbness, prickling or tingling in your feet or hands, which can spread upward into your legs and arms

Sharp, jabbing, throbbing, freezing or burning pain

Extreme sensitivity to touch

Lack of coordination and falling

Muscle weakness or paralysis if motor nerves are affected

Not a single disease, peripheral neuropathy is nerve damage caused by a number of conditions. Causes of neuropathies include:

Vitamin deficiencies. B vitamins — including B-1, B-6 and B-12 — vitamin E and niacin are crucial to nerve health.

15 hours ago, water said:

Regarding ncgs although they have made some headway into it but still the jury is out on it. It couldn't be even a thing. Everything is so confusing.

It's not that confusing. NCGS is a real thing. Please don't believe in the myth that NCGS may not even exist. It's a genuine condition which can have a profound impact on almost all aspects of a person's life (especially if the condition is unrecognized!): both physical and mental health, all kinds of relationships (with family members, friends, partners, colleagues), career, job performance, your energy levels - how much you're able to accomplish in a day, ability to be financially independent, education level, study results, continuous learning etc. 

15 hours ago, water said:

My problem is I already have an autoimmune condition so it could affect the celiac test results. The fact that am taking drugs for it only adds to the inaccuracies. I won't be going to doctor anytime soon. So if you get any opportunities , please ask around if immunosuppressants affect test or not. It would be very helpful.

Call a GI doctor and ask them. You don't have to go there in person to ask about this. After you do this, you can also call another one just to make sure the info the first one gave is correct. My suggestion is that you get 2-3 independent opinions.       

I agree with Judy3 - malnutrition, vitamin / mineral deficiency.

You can read the following article: 'Nutrition and nail disease':

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Beau's lines are discussed on page 423:

- protein deficiency

- pellagra = B3 deficiency

- dysregulated blood mineral levels - such as low calcium

- arsenic toxicity

Abstract:

The nail is a specialized keratinous skin appendage that grows approximately 2 to 3 mm per month, with complete replacement achieved in 6 to 9 months. Although this structure can be easily overlooked, nail disorders comprise approximately 10% of all dermatologic conditions. This contribution first provides an overview on the basic anatomy of the nail that will delineate between the nail unit (eg, hyponychium, nail bed, proximal nail fold, and matrix) and anatomic components not part of the nail unit (eg, lateral nail folds, nail plate, and eponychium). The function of each nail structure will also be presented. The chemical profile of the normal nail plate is reviewed with a discussion of its keratin content (hair type keratin vs epithelial type keratin), sulfur content, and mineral composition, including magnesium, calcium, iron, zinc, sodium, and copper. The remainder will focus on nail manifestations seen in states of malnutrition. Virtually every nutritional deficiency can affect the growth of the nail in some manner. Finally, the discussion will include anecdotal use of nutritional and dietary supplements in the setting of brittle nail syndrome as well as a brief overview of biotin and its promising utility in the treatment of nail disorders.

There are two misconceptions I'd like to correct - can't decide which one I'd choose:

1. Celiac disease is temporary - once you heal, you can eat gluten again.

2. I'm a diagnosed celiac but don't have any symptoms - this means I'm fine / healthy - the tests were wrong (false positive) and I'll keep on eating gluten.      

3 hours ago, Bonniedog said:

I have most of the symptoms of  celiac disease and DH and have had negative results for IgG and IgA.  I am worried that the negative results may be due to  IgA deficiency.   My doctor has ordered protein electophotesis but this does does not seem right to me.  Advice regarding the correct tests would be much appreciated.

 

Hi, just a short reply:

- Gliadin IgA, Gliadin IgG, TTG IgA, TTG IgG, Endomysium IgA, Endomysium IgG + Total IgA (= serum level of total immunoglobulin A)

- 10 percent of celiacs are seronegative, i.e. negative blood test + positive intestinal biopsy

- some people are non-celiac gluten sensitive (NCGS) - no tests available

- DH is diagnosed via a skin biopsy - a dermatologist can diagnose it; only celiacs have DH

Hope this is a bit helpful

You can also search this website for more info or read other (older) discussions. 

31 minutes ago, ravenwoodglass said:

I would advise against taking this right before the interview since they could increase your brain fog and space you out even more than the gluten reaction does. If anxious they might help you get a good nights sleep if you take a minimal dose before bed the night before IF you can get a doctor to prescribe one. 

Yes, I wouldn't recommend them for brain fog either - I should have said it, sorry. It really depends on what kind of issues Mat82 has. Also, we don't know if he has any positive/negative experience with benzodiazepines. So, it was only a suggestion.

They can help with anxiety, panic attacks, trembling, cold sweats, jitters etc. They can help with things like exam stress or job interview anxiety. 

However, everyone is different, can have a different reaction.. and there are various types of benz. and doses available. So, I gave advice based on what helped me in the past - e.g. during exam periods at uni. I was taking a min. dose 1-2 hours before an exam and it was extremely helpful. I was calm, wasn't trembling, was focused and could think clearly. And, I wasn't sleepy - just calm. But not everyone may react  in the same way, of course.

If I were in your situation, I’d eat only the minimum amount of gluten. According to this source, it is ½ slice of bread each day for 12 weeks.

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I think the more gluten you consume, the worse you feel. So, it wouldn’t be a good idea to eat more than necessary..

If you are already consuming only the min. amount but don’t feel well, then you can miss a couple of days (1-3), in my opinion. I think a gluten challenge as such – i.e. its length, the daily recommended amount of gluten etc. - is just an estimate. So, I personally would risk not eating gluten on Monday and Tuesday. Then, I’d eat it again on Wednesday after the interview. I’d probably double the amount of bread on Thu, Fri to ‘make up for’ Mon, Tue.

Of course, it would be better not to to skip any days, but I do understand that the interview is important to you and you want to feel ok and make a good impression.

Maybe you can take a benzodiazepine approx. 2 hours before the int.? (If you’re taking any other drugs please be wary of possible interactions. Also, benz. are addictive and not allowed for long-term use.) They can be helpful when used occasionally though.

I hope all goes well with your interview

Posterboy, thank you very much for your reply - it’s very helpful to me. I’ll read the studies and blog posts you have recommended.

I’ve kind of reprioritized things in my life recently. If I were to choose among different career paths now, I’d choose the one which is not very stressful. So if my options were: 1) less stress/lower salary and 2) more stress/higher salary, I’d choose the first one.

The main reason is I’m convinced that extreme stress was actually a trigger of my ncgs. There is an interesting discussion about inflammation, stress and celiac/ncgs in another thread on this website. I believe that stress leads to inflammation and inflammation leads to celiac/ncgs.

So I just want to say that I’d make my decision based on these criteria – not too much pressure or long hours.

I probaly wouldn’t recommend setting up your own business now. I know a couple of business owners and the beginning was very tough for all of them. Working as an employee, e.g. for a small business, would be better, in my opinion.

You’re very early in the process of getting used to the new lifestyle so I think you’ll see things more clearly and in a more positive way in the near future 

6 hours ago, ravenwoodglass said:

The B vitamins are water soluable so your body will excrete anything you don't need. You can take the Stress level Bs as long as you feel you need them. However until your gut heals you won't be able to properly absorb and utilize the B12 from a tablet. Add in a Sublingual B12 daily. These are dissolved under your tongue and enter your bloodstream through the oral mucosa. Don't be scared off by the high mgs. Your body will get rid of any it doesn't need with no harm to any of your organs. I took high doses of the B's for many years. The B12 in particular because of severe neuro impact. Even before diagnosis it was helpful with the parathesias (tingling in extremeties).

Thank you, ravenwoodglass. I feel more calm after reading your reply  My own experience with supplements is very limited, so seeing the high doses on the B-complex label freaked me out a bit.

I will definitely purchase the sublingual B12 next week. Another B vitamin that is not included in the B-complex is B9 (folate) so I guess I’ll get that as well.

6 hours ago, ravenwoodglass said:

I don't know a lot about magnesium but do know that large doses can cause loose stools.  We have some members much more knowledgeable on that one.

I’m taking a magn. lactate now, it’s 500mg magnesii lactas dihydricus per one tablet. The recommended daily dose is 2-3 per day. The producer doesn’t say how much elemental magn. there is. I’ve googled it and 12% seems to be the usual amount for magn. lactate – so it would be 60mg/tablet.  

Next time I’d like to buy magn.+zinc+calcium supplement instead of magn. alone.

6 hours ago, ravenwoodglass said:

Lastly if you do intend to have a vitamin and mineral panel done do talk to your doctor as you will need to stop supplements for a bit to get an accurate blood level.

Well, she wouldn’t listen to me unfortunately  she’s the type of a doctor who prefers to give people a million drug prescriptions a year rather than discuss and test for deficiencies. Even if a person is underweight - she doesn't care. That’s why I have to research it myself. I do have an option to get the tests in a private lab though.