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Jm34

anxiety, celiac, problems, doctors, i'm lost

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Now i just realized that when i first took these "vitamin D 1000 NE" tablets, i felt somehow this weird low blood pressure like feeling but my parents told me i shouldn't care just go on but then again now i read the "leaflet" (idk if thats the right word for the paper included with the pill), it contains sucrose... which in the end is fructose... darn it! I will fight with the g*****n allergologist i have a date set with that i must be checked for this f*****g fructose intolerance. In the meantime i will change these "vitamin D" pills for some other that is sucrose free... or if i remember it right, i read about some "vitamin D drops" or something...

I didn't really try unpeeled fruits in a long time tho but i will try to wash some peeled apples and try them later today, thank you for your reply!

news: I washed an apple, peeled it, washed it again, ate it... now the whole world spins with me ugh it's like crazy like i'm crazy drunk wtf?... and i'm swelling like crazy too....... ugh...

news: So this is the swelling that comes from under my knees like crazy and on my head under my hair and in my maybe around my waist but idk... i am dressed up like crazy because i have this shivering feeling randomly during the whole day. It's worse if i have to piss (it used to be bad if i had to s$#&) but then if i eat some apples i'm immediately swelling like crazy out of nothing and it's like really hard to focus on things i'm seeing, damn it will take so much time to reach the 20th of december. QQQQQQQQQ :( :SIGH

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On 12/6/2016 at 10:15 AM, Beverage said:

 

Some of the problems you are having may or may not be related to Celiac's. You may also have a problem with a bone in your neck or something there being out of place, which could cause the tingling and numbness in fingers and hands. Have you heard of Thoracic Outlet Syndrome? You might want to read about it and compare your symptoms.  Not to throw more ideas at you, but I feel there are multiple things going on.

Numbness and tingling is a common reaction to gluten.

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So some of my recent serum tests arrived:

tTG IgA 5.1 U/ml  reference for negative: [0-10]

tTG-IgG 5,1 U/ml reference for negative: [0-10]

EMA IgA negative

EMA IgG negative

So this probably means that my diet is good... yet my hair still falls out like crazy or my increased stomach acid which didn't even go away even when i took strong ppi pills... :( :SIGH

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So today, i ate 50mg of flush niacin, shortly after in about 15 minutes, my nose and my mouth became runny, like the inside of my nose and my mouth were sweating like crazy. I blew my nose out and straight water came out... I never really fellt anything like this before and my throat were itching like crazy for like 10-20 mins. Note that i ate smaller amounts of niacin before the 35mg in my vitamin B pill and i started this flush niacin pill by eating only 25mg for 4 days, today was a first day of double dose ~ 50mg.

I can't wait till my serum tests will come for histamine intolerance, the more i read about it the more i realize it... Even my first problems with my urine can be related to histamine intolerance...  Somehow even feeling sick after eating smoked meat, or canned tuna even makes sense now even tho everything i ate were gluten free... :SIGH

If i don't register to this forum and if i don't fight with myself and my family and my doctor over these symptoms i have for years now, i would never been tested at all. It was a s**t day when i felt so bad, so bad anxiety or similar when somehow i remembered that when i were at the laboratory once in this year's summer, an old lady suggested me that i should be checked for histamine intolerance but my mother said to me i shouldn't because my IgE values were always good... yet in the end i realize IgE values has nothing to do with it...

I just can't wait, ohh i pray to the god every night before i go to bed... ... :(

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Now this is sounding more and more similar to my experience.  The question my naturopath would be asking is what is the root cause of super high histamines in your body so that anything else that you eat or are exposed to has such a severe reaction.  I had tested super high for candida albicans antibodies.  I really didn't start feeling a lot better after going gluten free until we addressed the candida.  When I am able to keep the candida under control, my other allergies go down and I am able to smell again. Have you been tested for candida?

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Yes, about 4 years ago, i went through candida diet and i went through pills. I ate "nystatin" for like 3-4 months or similar i don't really remember but then my Candida IgG were going up... Then after some time my internist told me i shouldn't care about candida IgG. So i went and checked an unction from my throat which were "candida kefir" positive or what if i remember it right. Then my GP gave me another pill for it, they were insanely big capsules that i would only need to take like 4 pills or so or similar, like 1 pill/week... Then nothing really changed sadly.

Now after i'm on a yeast, milk, egg whites, corn, oranges, peas free on top of the gluten free diet for about a half year now my candida IgG value went down to normal (it wasn't normal not even once in the past 7 years or so)... even my internist told me that it would never go back to normal... yet it still did.

I still have this insane acid reflux like problem that if i don't eat for a maximum of 3 hours i become like sick. I start to feel a huge nausea and i keep swallowing or i can't explain, it's like some kind of fluid is irritating my throat so my saliva keeps producing and i feel this weird panic like symptom which isn't a panic attack... and i feel a pressure in my chest. Then again the worst symptom is that my throat keeps this weird fluidy (almost like burning) ~ like some kind of phlegm slowly crawling down in my throat or so feeling which just doesn't go away for like 7 years straight since it started to happen.

Then again doctors told me that i'm stupid and i just think that i have a problem so i must eat xanax and huge amounts of antidepressants and gtfo... They even told me that if i don't feel better from the gluten free diet after being completely gluten free for 6 months then i must stop the diet because it isn't a celiac disease then.

So i did what they tell and i stopped the celiac diet, after 3 years i realised (the hard way because of diarherra after eating a creamsoup (with milk inside)) that i'm intolerant to lactose but before i could eat cheese and drink milk huge amounts, it used to be my favourite food since my childhood.

So now i have a diarherra from lactose they tell me a diarherra is because i have panic attacks and anxiety and not because of lactose... then i tell them can i be checked lactose intolerance?! ... There are like 10 places in the whole country for a h2 exhalation lactose intolerance test...

This were my life in the last 10 years... i live day by day... Anything i feel i tell to any doctor they just tell me anxiety / panic attack xanax/antidepressants or gtfo.

The only lucky part after all is that my internist checked my anti-transglutamilase values last time i became really sick a year ago with huge constipation and massive stomach pain i were basically living on antispasmodic pills... but then again he tells me to eat gluten and antidepressants.

Damn i can't wait for this histamine intolerance test, i pray to god every night before i go to sleep that it may turn out to be positive and it would answer at least 90% of my problems... then again i paid my own money to be tested in a private blood collection area, since after i paid for a food intolerance IgG test there one old lady suggested me this test, but since i was crying out here somehow my brain remembered her so i read up it's symptoms.

Ohh god just let it be that... just let it be, every f*****g christmas i ask for nothing but to feel better and it never happens. :(

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Hi Jm34, i've had some symptoms similar to yours, like stomach acidity, psychological/neurological symptoms, blood pressure problems, bloating and constipation, so i think i can help you. I haven't found a way to cure them definitely yet, but hopefully i will. By the way i don't know if i'm celiac yet, because i'm still on a gluten challenge, but probably i will test positive. Now here is some suggestions:

Acid reflux isn't always caused by excessive stomach acid, in fact it can (often) be caused by LOW stomach acid. When stomach acid is low food tends to stay longer in the stomach, and this causes acidity problems. PPI drugs reduce the acid even more, improving the symptoms but impairing digestion.

Celiac disease causes an increase in intestinal permeability which seems to relate to several food intolerances. Start keeping a diary of how you feel and what you ate. With observation you can make some interesting associations. Foods at risk are: gluten (of course), dairy, nightshades (tomatoes, potatoes, eggplants, carrots...), legumes, soy, nuts, other grains (as rice). It's a lot, i know, but these food can cause intolerances.

Furthermore celiac disease is often correlated with SIBO (small intestine bacterial overgrowth). This thing can cause malabsorption and excessive fermentation (leading to bloating, constipation or diarrhea). Malabsorption can, i think, well lead to psychological symptoms. In case of SIBO your symptoms are likely to improve on a low FODMAP diet, in which you exclude highly prebiotic foods. These foods are fermented by bacteria, and if you have SIBO they make it worse.

Interestingly, low stomach acid is one of the lead causes of SIBO, so PPI could make it worse over time. If you have acid reflux and/or SIBO, you can try to increase your stomach acid, with a low dose of betaine HCL and then maybe increasing it. Stress also decreases stomach acid, as you concentrate less on food. This can lead to digestion problems and SIBO.

Your stomach pains also make me think to ulcers or H. Pilory infection, but if they did an endoscopy they should have seen it. H. Pilory is often tested with breath tests or stool tests. If actually you have stomach ulcers (which weren't seen by endoscopy) then reducing stomach acid is helpful.

Pounding heart feeling is something i have too sometimes and is strictly connected with general well being. When i feel good my heart beat is unnoticeable, and i think this is related to what we eat. Probably is one of the signs of autonomic dysfunction. How the gut is involved in this, i don't know, but could be.

If you suspect you can have some of these condition you can test for SIBO (with glucose and lactulose breath test), H. Pylori (breath test or stool test); also, a stool test for bacteria and parasites would be appropriate too.

I have many of your symptoms and i usually find relief by fasting some time (16-18 hours), then eating a fruit based diet (bananas, oranges...), with the addition, 2 hours later, of 4 raw egg yolks (must be fresh and organic, and probably it's better you start by 1 and then increasing). With this protocol the next day i'm usually much better. The explanation is that with empy stomach fruit is absorbed quickly and not fermented, while egg yolks are full of vitamines and nutrients that improve detoxing processes. Choline (required for methylation), B vitamins and clean cholesterol are some of them.

Hope it helps! i'd like to know if this works for you too

 

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Hi Leotto!

So here they always check me for H. Pylori with serum tests, and it allways were negative for me however idk about "SIBO". However i may try what you suggest and eat some fresh fruits on an empty stomach.

I don't really feel the heartbeats... i rather feel like i have low blood sugar level or bad blood pressure, i'm like almost fainting if i sit down or stand up, or i just bend over to pick up something from the floor. Yet eating dextrose doesn't help and my blood sugar lvls were ok when i had similar symptoms i don't remember like 6 years ago, but somehow it is caused by this celiac diet or i just don't understand.

Somehow my whole eyesight is vibrating but i don't have the symptoms of a migraine. It's like really weird it's "almost like a migraine" but it isn't. My head won't spin, i have some nausea but i won't vomit, and this vibrating thing is on me for "years" since i have this problem it's there. I were at the oculist here, she found no problems... sometimes i feel like i have a panic attack yet it isn't what it used to be at the university before where i kept bloating, burping and feeling sick that i was scared of entering the classes.

It somehow started like this: I feel sick if i don't eat something for 2-3 hours because if i don't then i start to keep gulping and somehow my throat keeps pinching and i feel pressure in my chest... Sometimes i even have this shortness of breath feeling out of nothing without any stress or anything. My left eardrum which has a hole on it keeps like blowing out, like i feel warm air coming out of it... somehow theres this pressure in my head... i feel this weird pain in my jaw... I keep burping and bloating...

Then when i had to attend my classes after this thing started, it was really stressful for me because i was like ashamed of myself because i'm a really strong person in that matter, i keep quiet and ... because thats the way i was raised. In my book a student should stay quiet and listen to the class etc... but i kept like burping and my throat went nuts so with me being raised as... i couldn't just stand up and go out, or eat something i had to sit there for 2 to 4 hours straight... i'm a strong willed person i stayed and suffered and thats on top of a 1 hour train trip combined with trip to the university from the train station. So every time i had to take a class i wouldn't eat for 4-6 hours at least but then i feel this like some mucus is slowly crawling onto my throat or my sinus is like full and i can't breath it's really weird. Then after being cured with PPI for acid reflux it didn't stop, i had to take insane amounts of medicine for it to have any effect. Like i was eating one of the strongest PPI the gastroenterologist prescribed, then i went back after 1 month that i has no effect on me... he were just shouting and bashing me that it's the strongest pill.... and my passage test (drinking contrast liquid then being x-rayed for some hours upside down etc...) still showed a full of acid stomach... even tho i didn't eat or drink (not even water) anything because the test required a completely empty stomach. Then after nothing were changing for a year or 2 i started to feel this panic like thing that i was basically started to feel s**t straight after the thought came to my brain that i have to go to my class. Then i used to have this panic attack like thing which would end up in a weird headache but it disappeared immediately after i run out of the class of the first time. That must be like a panic attack or something but then after 5 years or so, it became like a pulsing thing for me, sometimes worse sometimes i didn't even feel anything... it was way better if i didn't think about i can't eat for 2 hours or so... because after all my symptoms is still here and my throat still keeps pinching if i don't eat for 2-3 hours and the mucus slowly cralws down my throat and ... and ... and ... but then again the doctors just wanna pump me full of antidepressants with xanax... I even tried to take frontin as one doc suggested which is basically xanax yet it didn't help at all, i was just even more scared because of the side effects...

The food we usually eat here in Hungary is full of histamine thats for sure and somehow i can relate to it but i don't wanna go into that route for now because i'm waiting for the serum test results (because it would explain so many symptoms i had over the years from urinal to everything else...). I hope and pray to god that this result would be positive :(... they will arrive soon 14 days ~ as they told me, one week is over so but still it is a really long time... :(

So now basically i just wait and pray to god while eating gluten free, i have found a place to get some of these breath tests tho i may try one of those if this histamine intolerance test would come out negative but i hope it's not.

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So now after taking these retard potassium pills as my internist prescribed now i'm getting diarherra from taking them... i took them for around 12 days ~ or so and the leaflet states that if i get repeated diarherra i should immediately stop taking the pills..... zzzz It's the first day i have diarherra from the pills but the 4th time today in 2 hours~ and 2 times non diarherra stool before in the morning... I guess i won't take the pills today... the stupid sideeffects are so serious on the leaflet...

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You have a heavy burden.  You've definitely gotten some good advice already.  I had a negative blood test for gluten sensitivity, but had gone mostly gluten-free and didn't want to go back as I felt so sick on gluten.  Over the past 3 yrs, more symptoms have popped up and I've eliminated 1 food after another.  I have weight to lose as well.  I have lost some weight, but need to lose a bit more.  Foods I once thought healthy, I realize, don't agree with me.  After an elimination diet, I was able to add back some foods... like eggs and paprika... occasionally... but not daily.  I had more anxiety before getting my diet under control as well.  Panic attacks are horrible!  I happen to be a nurse and I look at things a little differently than some people.  You may be having neuropathy... that odd sensation, tingling.  It's fairly common.  As someone suggested, you need to keep a food diary.  Along the side also record what time you ate and the time you had bowel movements.  These can also be useful to show your doctor.  There is a condition called Dumping Syndrome, I think, in which your bowels react to what you've eaten.  This probably exists with a damaged intestinal lining.  You can have reactions up to 3 days after eating something as it travels down.  That's what cross checking a good food diary can help you figure out.  If the Niacin causes flushing, take it before you go to bed.  My husband took high doses for a while and was told to take it at bedtime for that reason.  You talk of eating cream soup.  Unless it is marked gluten free, most will be thickened with some form of gluten.  I have begun taking Betaine HCL to increase my stomach acid.  My husband was on PPI for many, many years.  They are useful for a short time to treat ulcers, but shouldn't be taken forever!  So many people that think they need antacids would do better taking  MORE acid.  The food that lingers in our stomach starts to ferment, produce gas and make us burp & the acid comes up the esophagus where it's not supposed to be and burns like crazy on that tender tissue!  Once we changed our diet to low carb and high fat, he stopped taking them and has had NO signs of the burping, etc he used to have!  He was a hard subject to convince, however.  Regarding the SIBO... since you did, I believe have a Candida problem once before, you would be very prone to have it again, even if not constantly when tested.  You would probably do well with less carbohydrates, fructose, sucrose, sugars in general, starches-even gluten free ones, less potatoes, rice, pasta.  It is like being a detective.  Start with very simple ingredients.... vegetables, butter, meat.  Season only with salt and pepper for now.  Let your intestines heal.  That could take 6-12 weeks or more.  Don't push too fast.  Only when you feel better for a couple of weeks should you try adding in.

I wish you the best of luck.

Debbie

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Hi again Jm34, i occasionally have orthostatic intolerance problems too. Orthostatic intolerance is the symptoms you refer to: when you change your posture and for example lean down, the blood pressure doesn't regulate properly, leaving you with feelings of weakness and lightheadedness.

I have found it correlates greatly (in my personal experience) with diet. Gluten seems a probable culprit but i started keeping my diary only few time ago, so need more data. I also remember i often had this problem with large meals, for example eating big meals of sushi (which is rice based), so gluten may not be the only factor involved.

What could be the cause? There may be some explanations: some studies found that an accelerated gastric emptying could lead to postprandial hypotension, so maybe eating calmly will help. In your case (as in mine) overeating is also highly counterindicated, i say this because i always ate as much as i could, chewing 1 second for bite, and this leads to problems. 

Another common explanation is, as also said by deb, of neurologic origins. For example i have, along with occasional orthostatic intolerance, several symptoms regarding the nervous system and brain. Cold hands (probably hypothalamus), blood pressure (prob. hypoth. as well), tremors (cerebellum and hypothalamus) anxiety, irritability, constipation, occasional dry eyes and dry mouth. Psychological symptoms are probably related to a sympathetic system dominance "fight or flight response", more than a parasympathetic one "rest and digest". I think these symptoms could be explained by an immune response to dietary proteins.

I can in fact improve all of these symptoms on very restricted diet, which is not what i aim to (really hard to follow on long term) but it works for me. What i'm trying to discover is: how the hell can food cause this? Since these symptoms improve with fasting it has to be something external. Egg yolks help tremendously, meaning vitamins could be involved, but vitamin complex for some reason didn't help. So i think one or a combination of 1) immune response caused by food antigens 2) excessive endotoxins (for example created by SIBO or C. albicans) 3) low vitamin absorption.

Regarding number 1, it has been seen that body inflammatory response (immune activation by cytokines) has effects on blood brain barrier, leading to weaker brain defenses. In celiac disease is obvious that the immune response is driven by gluten, but it seems you aren't well even avoiding gluten*. Since intestinal permeability is greater in celiac disease it may be that some other common antigens recognized by many users on this forum are causing the reactions you experience, so you can try to avoid the foods listed some posts above, and keeping a diary. Low stomach acid can lead to GERD and i think it can impair protein degradation, accentuating the symptoms.

*i assume you aren't involuntarily exposed to gluten in any form

SIBO. I actually tested negative on glucose breath test, but it can give false negatives, as it is only reliable for proximal intestine SIBO, while lactulose breath test (i may do it in the future) gives more false positives but measures SIBO in the distal intestine (where SIBO is more probable). I'm not sure if i have SIBO, celiac disease, non-celiac gluten sensitivity or all of them, but i'm quite sure at this point that these are involved. I've been diagnosed with C. albicans too, but i'm convinced that candida is a consequence of other problems (digestive problems, intestinal malabsorption), so i think it is a direct consequence of SIBO or celiac disease. Anyway... i just started taking some antimicrobial herbs (oregano oil, allicin, olive oil extract, anticandida complex) to see if the situation improves. It can all be useless but i'll give it a try (and let you know if it works).

Reading your post i see you have problems when you are not eating by some hours. Question: are you currently taking PPIs with meals? In fact excessive saliva and phlegm can be well caused by stomach acid problems. If you are taking PPIs it could be that "fasting" promotes a rebound effect for which the body counter-regulates stomach acid when the drug effect vanishes. But I really don't know if this is possible or just my invention.

So try with this

-avoid allergenic foods and keep a symptoms and diet diary

-suspend PPIs (properly and accordingly to your MD supervision) and give betaine HCL a try (with caution)

-don't overeat and eat slowly, try to increase salt in your meals. drinking more generally is good too (raises blood pressure).

And also, i'd really be curious if you can try raw egg yolks (organic and fresh, starting by low ammount), because i have many of your symptoms and these give me huge relief the day after. Choline is a vitamin contained in large proportions only in few foods. Egg yolks are one of them, and highly bioavailable. Choline is necessary and essential for proper methylation and detoxing, which i think could be involved in some measure with these kind of neurological symptoms; it also regulates several body precesses, even neurological. In my case, egg yolks improve dramatically the quality of the day after, especially if i'm on intermittent fasting.

One thing more: i am deeply convinced that the source of these problems is biological and specifically immunological, since i can alter greatly the symptoms with diet, but i recognize that stress can undoubtely affect digestion, and it has been also seen that it worsens inflammatory status. Thus value if some kind of unresolved stress is contributing to your condition and consider trying mindfulness meditation: this one, according to research, LOWERS body inflammatory markers and improve recovery!

Let's hope to get out of this soon

 

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So i have my serum test results... They told me that i can eat before the tests so i ate some of the usual Hungarian histamine rich foods... just some smoked sausages  because they stated i shouldn't be on a low histamine diet. This "histamine-intolerance" test turned out to be measuring my DAO levels (diamine oxidase) which turned out to be low compared to the reference. My measured level were 6 U/ml while the reference is [10-100] and i've read that this value is suggesting the probability of "histamine intolerance" if even thats the correct name of the problem. Now i don't care about it until i see this allergologist here at the 20th of december but maybe my problems will disappear?! Like randomly sneezing or my sinus is pressuring like i can hardly breath thourgh my nose, or like some kind of mucus is inside my throat or .... ... or ... my stomach acid which wouldn't go away no matter what and i keep choking if i don't eat for 2-3 hours.... maybe.

What can i do?! I will just keep praying to god maybe this time i've found something thats an actual problem. If this allergologist will do nothing i will look for a gastroenterologist but in this whole country there isn't any test to check my histamine levels... even these DAO tests are really rare... Like i go to my internist and he is like ~ never heard about this or even about these tests...

I will write back if something really changes for me, and as always thank you all for everything.

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Hate to say it but this keeps popping up in my mind, your homemade sausage might be doing it. If you have used a contaminated spice or ingredient in the grinder, packer, it could be contaminating later batches. I know the old modified meat grinder I use for a seed mill is metal and porous. Would be near impossible to clean out good if it got contaminated.

I did a bit of research and when spices are mixed on rare occasion with a free flow agent in European countries wheat base is used. Just a thought that has been bugging me, seems like whatever is causing your issues is a almost daily exposure. I am thinking either a staple food of your diet, a soap/laundry detergent in your house, or perhaps odd allergen (most likely) that is around you daily. Let us hope the find something when they check for allergies.

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I just thought of another thing... MOLD.  Mold toxins can mess up just about every system in the body, especially when you may have other autoimmunity problems!  Mold can cause you to overract to other things and cause antibodies to overcome your system.  Have you been diagnosed with Sjogren's?  That was my first diagnosis.  The Eye Dr. did the paper test in my eyes because they are so dry.  I have had extremely dry lips for 35 yrs!  I thought I was addicted to lip balm, but, in fact, I don't produce the protective coating most people have on their lips.  It causes many, many other symptoms.... some of which most doctors aren't even aware of.  It also causes neurological disorders in some people.  A good quality Fish Oil capsule is essential here.

I was reading about multivitamins the other day.  It was stated that they do more harm than good because of the fillers they use.  The vitamins are low quality too.  I take individual supplements based on need.  You also probably aren't going to get a good quality from the supermarket or department store, according to the article.  There are lists of high histamine foods online.  Histamines are a response to an invader.  It can be food or a virus.  What one of us reacts to, the other person may not.  It's very individual.

Keep the faith.  May God give you wisdom and healing.

Debbie

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So i was at the allergologist, she basically said to me "i don't care", exact same words. How do i feel?! My symptoms aren't severe so "i don't care"... then i asked her about my "DAO deficiency" she said nothing... just passed onto some other topic... Mocking me about the way i live, that i don't work and i do this and i do that... Prescribing me "dezloratadin" 5mg pills to takem them at night... without anything really (basically i've got prescriptions for a half year) just mocking me about everything i say... telling me that i know nothing i'm stupid i'm sh*t she is the brain of the whole country basically the biggest of all and i should measure my symptoms they aren't severe i mustn't go to her order.

Then i was telling her to at least check why i can't breath through my nose in these rushes i have... then she basically said i should breath through my mouth then... then she prescribed me a serum test for dust mites and some other sh*t...

Then she just shouted at me and shocking me then she just continued mocking me that i'm a pathetic piece of sh*t and i just need to gtfo and see a gastroenterologist if i'm a celiac.

My first time at this allergologist (although every one here suggested her....) and it was my last time too!

So in the end i waited for this nothing for 3++ weeks...

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............OK.......I got to say sorry but I think you need to move somewhere that actually has good doctors and a healthcare system that can help you. Sounds like everyone in your area is a quack or does not care. That is ridiculous to have to deal with that.

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I saw that indeed a DAO deficiency could cause some symptoms similar to yours, so perhaps you may want to try a low histamine diet https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/ This kind of "fresh foods" diet is also useful to rule out an eventual involuntary gluten exposure. If the diet works, you can reintroduce your habitual foods one by one, and check the symptoms to eventually find the culprit.

 

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I also want to pipe in about the sausages ... it's not just the ingredients that all have to be gluten free, but the processing of them. I used to make my own sausages, and people usually clean them out by grinding through several slices of bread. If the grinder has EVER been used with any gluten ingredients, then it is contaminated and not safe to make food for you.  Please be careful and good luck, never give up trying.

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Hi Jm34, how are you doing? I'm writing because i've experienced some symptoms similar to yours these days, right after having a period (lasted 3-4 days) of being symptom-free, which was amazing. Then i've had a decline in the symptoms, which i'm not able to explain. Some of these include anxiety, fear, introversion (and social withdrawal), paranoia, nightmares, lethargy, worsening of tremors, orthostatic hypotension, stuffed nose, as well as constipation and abdominal bloating. Consulting my alimentary diary hasn't provide helpful, due the large number of foods i've mindlessly introduced once becoming symptom-free.

This happened even if i've been totally gluten-free, and careful for every contamination, thus i've reached the conclusion that some other food sensitivity has to be present. Possible culprits being chocolate, eggs, bell peppers, soy, nuts, chicken, too much fruit, alcohol (mostly wine), water chestnuts, kefir, vinegar and mustard; i've also consumed sausages, and even if it was stated gluten-free on the packaging, i'm now a bit doubtful due to the past messages on this page. However i was already sick when i consumed them.

Instead, in the period of being symptom-free i've consumed only turkey, vegetables (mostly carrots), some fruit and egg yolks; that's what i'm going to try again. Along with this elimination diet, i'm going to reduce fruit consumption, since this could be contributing to SIBO, which would explain some of the symptoms.

Maybe my next results could provide helpful to you too. Also, did you make some improvements meanwhile?

 

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So i post some update about myself and my problems...

Well actually things got worse now my mother remembered that once like 6 years ago i ate this antibiotics which were actually good against SIBO and somehow i've got better. I didn't really remember that but now my internist prescribed this antibiotic.

These posture changes are really weird, like sometimes i'm feeling so much anxiety and i'm scared but then i push the back side of my head and somehow the blood circulates again and i'm feeling better in max 10 mins, i even tried to knot a scarf on my head... it actually works it's really weird.

I'm trying to eat low hystamine foods but i can't find a doctor who knows anything about histamine intolerance around me. The last one i tried to call even refused to set me a date that he can't help me...

What is really weird that my days are like, i get up, my eyesight is really vibrating but i feel good, i feel happy, then my stomach starts to burn (thats normal i assume i'm hungry but it doesn't growl or make any sounds just burns) then i eat something i immediately feel full and when i eat my lunch it's like i can eat as much as i want it's weird, like years ago i could drink a small glass of water like 1dl max, now i can drink a 5dl out of nothing even on a full stomach without any problems... Then sometimes before or sometimes after my lunch my stomach starts spasming, and most of the time i can relieve myself. I also introduced myself a walk to the end corner of the street every day after my lunch which helps a little with the full stomach feeling. Then after that after my lunch i do something on my pc maybe watch some tv shows etc... at around 16:00 ~ 18:00 i either start to feel out of sudden depressed or anxiety and my eyesight starts to vibrate stronger...

It depends on which day or i just don't understand. How can i just feel superb happy good then out of nothing at 16h depressed every day like a machine. Then my sinus get's full and it's like hard to breath, this allergologist prescribed me one antihistamin for a half year, i tried that it helped me "a little" like the mucous in my nose started to hurt like crazy but my sinus felt better. I took those antihistamine pills as brescribed but after the 3rd day i started to hallucinate, basically i was seeing rainbow ~ color changing spots in my eyesight now that thing scared me, then i went to my internist who told me i shouldn't eat antihistamine pills like that ~ every day as prescribed by the allergologist, i should only take them if i cannot breath anythow or it's really bad.

So now trying to eat low histamine foods (at least trying...) caused me to stop that crazy sweating but i still have these cyclic depression/anxiety at each day. Sometimes if i eat something or i don't understand i won't get depression or anxiety for like 2-3 days in a row then it starts again.

I'm trying to put back lactose to my food as my internist told me to try some... and now i'm going to try these antibiotics, he told me if i may have SIBO it's hard to be diagnosed and it's a reccuring thing that if i eat the antibiotics it can get better, i will need to eat it like 3 cycles ~ 3 different months or so but even then it can return.

I've got some of this Betaine HCL powder since i've may have low stomach acid even suggested by some, every time after i eat i keep burping like crazy and my chest tightens my stomach burns...

I took it today as the first time, it didn't really feel that bad like after i ate i drank some and it didn't give me any burning or bad feeling at all. Then even my mother told me that when i was really young i had to take this because i had low stomach acid as a baby... or so...

I'm trying really hard to stop thinking about the symptoms once again, this were the reason i didn't really write here but i just have to do it now.

I am going to read the recents posts i may have been missing and thank you all!

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23 hours ago, Jm34 said:

So i post some update about myself and my problems...

Well actually things got worse now my mother remembered that once like 6 years ago i ate this antibiotics which were actually good against SIBO and somehow i've got better. I didn't really remember that but now my internist prescribed this antibiotic.

These posture changes are really weird, like sometimes i'm feeling so much anxiety and i'm scared but then i push the back side of my head and somehow the blood circulates again and i'm feeling better in max 10 mins, i even tried to knot a scarf on my head... it actually works it's really weird.

I'm trying to eat low hystamine foods but i can't find a doctor who knows anything about histamine intolerance around me. The last one i tried to call even refused to set me a date that he can't help me...

What is really weird that my days are like, i get up, my eyesight is really vibrating but i feel good, i feel happy, then my stomach starts to burn (thats normal i assume i'm hungry but it doesn't growl or make any sounds just burns) then i eat something i immediately feel full and when i eat my lunch it's like i can eat as much as i want it's weird, like years ago i could drink a small glass of water like 1dl max, now i can drink a 5dl out of nothing even on a full stomach without any problems... Then sometimes before or sometimes after my lunch my stomach starts spasming, and most of the time i can relieve myself. I also introduced myself a walk to the end corner of the street every day after my lunch which helps a little with the full stomach feeling. Then after that after my lunch i do something on my pc maybe watch some tv shows etc... at around 16:00 ~ 18:00 i either start to feel out of sudden depressed or anxiety and my eyesight starts to vibrate stronger...

It depends on which day or i just don't understand. How can i just feel superb happy good then out of nothing at 16h depressed every day like a machine. Then my sinus get's full and it's like hard to breath, this allergologist prescribed me one antihistamin for a half year, i tried that it helped me "a little" like the mucous in my nose started to hurt like crazy but my sinus felt better. I took those antihistamine pills as brescribed but after the 3rd day i started to hallucinate, basically i was seeing rainbow ~ color changing spots in my eyesight now that thing scared me, then i went to my internist who told me i shouldn't eat antihistamine pills like that ~ every day as prescribed by the allergologist, i should only take them if i cannot breath anythow or it's really bad.

So now trying to eat low histamine foods (at least trying...) caused me to stop that crazy sweating but i still have these cyclic depression/anxiety at each day. Sometimes if i eat something or i don't understand i won't get depression or anxiety for like 2-3 days in a row then it starts again.

I'm trying to put back lactose to my food as my internist told me to try some... and now i'm going to try these antibiotics, he told me if i may have SIBO it's hard to be diagnosed and it's a reccuring thing that if i eat the antibiotics it can get better, i will need to eat it like 3 cycles ~ 3 different months or so but even then it can return.

I've got some of this Betaine HCL powder since i've may have low stomach acid even suggested by some, every time after i eat i keep burping like crazy and my chest tightens my stomach burns...

I took it today as the first time, it didn't really feel that bad like after i ate i drank some and it didn't give me any burning or bad feeling at all. Then even my mother told me that when i was really young i had to take this because i had low stomach acid as a baby... or so...

I'm trying really hard to stop thinking about the symptoms once again, this were the reason i didn't really write here but i just have to do it now.

I am going to read the recents posts i may have been missing and thank you all!

The neck blood circulation things seems to be quite serious matter: what did doctors say to you? I think some exams should be done for that, to exclude serious nerve/circulation condition.

For the other symptoms i'm not sure histamine could explain all of them; SIBO seems more probably. Also, some parasites could be most active at certain hours and would explain the other symptoms. You make try to take some anti-parasitic herbs and occasionally check the stools for visible parasites.

Another thing which could be related to "temporal symptoms" (symptoms at a certain hour) could be hormonal problems. Cortisol for example is subject to variations during the day. I don't know if hormonal problems could explain your symptoms. In my opinion some not for sure.

However you can now be quite sure that omeprazole is not for you, since it reduces stomach acid and worsens SIBO. You can expect some results just by interrupting it.

I'm sorry if my answer seems chaotic, but in the absence of improving more options have to be explored. For now of course stick with the plan of your doctor, which is indeed reasonable.

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Sometimes i just don't understand what can "celiac disease" cause to me, this question seems to keep popping up to myself: What do i feel if i eat gluten. You can say that go and try to eat some gluten but i'm not feeling good even without eating it. I'm now washing my plates and my cutlery my cups then i do the same before i eat from / with them. I started to write a food diary but like what if something i eat somehow gets cross-contaminated how would i feel then? The gastroenterologist kept telling me that if my bloodtests are good my diet is good, but what if i eat some gluten?!

What i also don't understand that 6-7 years ago when it first became really bad the doctors told me if the gluten free diet doesn't solve all of my problems (like hairloss etc..) then i should stop that diet, so i did after a half year because i was feeling so bad, then after a half year of eating gluten i slowly regained myself to a point what i would call a 60% with panicattacks at the university... Now i'm eating gluten free for a year i don't have any panic attacks but i have anxiety and the rest... and it's the same story as before... it's really weird. It's exactly the same, i eat gluten free i start to develop this weird headache and anxiety and these temporal symptoms which come at me every day at the exact same time, the acid problems is here again except this time i actually eat this Betaine HCL instead of PPI (Betaine HCL seems like after 2 days it did wonders to my stomach burning...) Yesterday i started to cough up some sticky mucus after eating my lunch and taking Betaine HCL... I can barely sleep now cause my sinus is always full so i can only breath through my mouth if i'm in a lying state. If i'm standing or sitting most of the time i can breath through my nose... and the shivering is really bad. Like if i have to wc no matter if i s$#& or piss i'm shivering like crazy... and sometimes i just shiver. Now after i ate something which i don't know yet i started to swell again. I drank a sip of water and i start to swell from my head at the beginning of my hair above my forehead under my knees, at my hand bends and all the way on my back.  Sometimes idk why i just have a very sore throat for hours just because i drank some water, somehow if i drink some syruped water my throat at least doesn't feel so dry... and these back pains at the join of my lower and upper back... and now i started to lose weight again.

How can one be sure if it's not a cross contamination?! Like really... how would i know if the... i just can't seem to understand... "is it even possible to feel sick from gluten yet the doctors say my diet is good because my serum test is negative" or like how long does it take to feel bad from gluten?! Like the ultimate question would be what is "the amount" of gluten that can cause problems?!

Now that i did this DAO test, i did eat high histamine foods even on the day of the test because they told me that it can be done on an non-empty stomach... yet my DAO levels were still low 6 U/ml while the reference is [10-100] but then again, i can try to eat rice for 4-6 weeks as these histamine intolerance sites state yet i can't find a doctor to help me... eating nothing but rice to lower the histamine levels which can't be measured with serum tests neither stool or other tests here in Hungary... How am i even supposed to eat nothing but rice?! I can't even do it for a half day...

My mother keeps suggesting me again to stop the gluten free diet because back in the day this helped me some... but why did it help me to stop the diet?! Eating celiac foods mean eating histamine rich?! You can't even find a workeable list for low histamine foods...

Too much questions just too much question to me who were programming computers since age 14 where everything is in a cause-effect relation but now everything is just about miracles and wonders to me because i don't understand anything... Even the doctors mostly tell me to gtfo...

I'm sorry for this post but again i'm just rumbling with myself...

I wish you all the best, and thank you all for being with me in this topic.

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Have you done a true eliminaton diet for 3-4 wks?  You probably have more than just gluten affecting you.  We did that and found several things that irritated my husband that he never realized!  Tomatoes was a shocker!  It's after you stop  ALL  the inflammatory foods, then add them back 1 at a time, that you really feel which ones are bothering you.  He also found out he can't eat eggs  EVERY  day either.  He has much less sinus congestion than before.

Debbie

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Hi Jm34,

After ten years of gluten free diets on and off and suffering all sorts of problems, I've discovered a sensitivity to maize.  I also had heart problems after lasagne, bolognese and pizza (all gluten free), but when I ate pizza made with baked beans instead of tomatoes and with less cheese, I didn't have the symptoms.  I have since cut out maize from my diet and used doves farm bread flour (tapioca, rice and potato) for baking and making pizza and bread and I haven't felt ill after eating.  I don't know if this is a long term thing, or just a phase, but I know tomatoes are very high in histamine too and so are mushrooms and peas.  My sister is on a histamine elimination diet and is eating lots of dried fruit and nuts as snacks to stop the cravings.  

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Eating plenty of fat and eating low carb, stops all cravings!  It's amazing!

 

Debbie

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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.
    Source:
    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.
    Ingredients:
    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.
    Sources:
    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. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023