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TheGlutenSyndrome.net .top Patient Perspectives on The Gluten Syndrome, including Gluten Intolerances, Gluten Sensitivities, Celiac Disease, and the risks of Gluten Challenges for Diagnostic Purposes (formerly www.GlutenSensitivity.net, www.GlutenReactivity.net)
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For latest version of each page on this website click "refresh" on your browser tool bar. Last updated March 24, 2009.
Adverse reactions to starting the gluten free diet or to gluten challenges/accidental exposure or wheat harvest
Jump to research and theories Jump to reperfusion theory, Jump to gluteomorphin withdrawal theory Jump to schizophrenia research Jump to reactions to wheat harvest
If you are experiencing serious issues that may be related to gluten withdrawal, gluten challenges, etc., and cannot find help, contact this website by email info@glutensensitivity.net AND jka8168@sbcglobal.net or call 630-628-9126 or 630-808-2079 cell. We will refer practitioners who are familiar with these types of transitions and other informational resources.
Why do these reactions happen? These reactions are not well understood but often gluteomorphin withdrawal is suspected if a reaction is noted upon initial withdrawal of gluten. Go to theories and research.
UPDATE: March 12, 2009
Here is an update including links to forum searches concerning initial adverse reactions
Below is a summary of responses received to the following post on the ICORS celiac list, December 2007. Thanks to all who generously contributed their experiences and time during a busy holiday season.
Here is the original question
Hi group, Olive Kaiser www.theglutensyndrome.net, www.glutenreactivity.net or www.glutensensitivity.net
Also click here for interesting research that may be applicable.
The responses
April 2008
I add this response after a conversation with a well known and very experienced, knowledgeable person with diagnosed celiac disease (the villi damaged subset). Here are his comments summarized.
"The gluteomorphins (opiods) create an addictive opiate like response in the brain. This is known through research. When gluten is removed from the diet, and the gluteomorphins dissipate, the effect may be similar to withdrawal from alcohol or other addictive substances. I know because I am an alcoholic. I have been dry for 26 years. I recognize the strong similarity between the discontinuance of alcohol and the discontinuance of gluten."
December 2007
My (then) three year old
daughter seemed to "get worse" for about one month after going gf. She
seemed to experience more pain and distress, and she had terrible,
uncontrollable tantrums. (for example - she managed to get herself out of
her car seat while we were driving, and once on a flight my husband and I
between the two of us could not keep her buckled in her seat. We had to
put her on the floor of the airplane and I laid down on top of her as the
plane took off - it was a nightmare). after approx. one month gf we saw a
marked improvement - first in her mood and behavior. It took longer before
her gi symptoms got better and she resumed growing. Hope this info is
helpful, Lynn Thank you so much for sharing. Knowing of your daughter's severe reaction is very helpful to us. And also that it resolved in time. Did you find any strategies that you thought helped her through it? Yes –I had to find a way to calm her – bubble baths and soft lighting and music seemed to help calm her. Then I would give her a little pepto bismol if she was complaining of pain, or feed her very simple food such as plain white rice or yogurt. My son – who is also celiac – was helped more by distraction when he had pain – we would put him in front of an engrossing movie and also give him either some pepto bismol or some very simple foods. My daughter is now 14 and completely healthy and normal in every way – it took her about 2 + years to fully recover after going gf ~~~
I suppose the only people who will Email you are those who had some sort of bad reaction. The only bad reaction I had was when I tasted GF bread for the first time. Ugh. Now I bake my own. I began to feel stronger and more alert within two weeks of going GF. I went from being someone who had to take two naps a day to hiking to the bottom of the Grand Canyon and back up the same day. ~~~
There is often depression associated with a new diagnosis of a chronic illness, and also anxiety/depression/anger/hostility/resentment can affect both the newly GF and their family/friends. The GF can be very hard to adapt to, and can be viewed as a horrible burden by many.
~~~
I believe, if I remember correctly, I mostly experienced a period of grief at the loss of all the good things I could never eat again. Also, I expected to recover almost immediately, and looking back, it too years. Things I learned along the way: B-12 stopped the pain in my joints and I quit feeling 90 years old almost immediately. Omega 3 helped lift the depression. Presently, I am in the clinical trial with Alba Therapies for the celiac drug. Honestly, I feel wonderful. This drug seems to stop the inflammations that have plagued me even after diagnosis. I hope this isn't to much information that you don't need. It is a microcosm of my journey. I wish you the best, (gluten free 5 years) ~~~
Was excited @ first to
finally be diagnosed as have had problems for years and was relieved to
finally know how to "start feeling better"- then became increasingly
stressed (frustrated) in learning "what is ok to eat." Still have my
days of feeling down-in-the dumps as the diet is difficult to cook when
another family member wants regular food and doesn't always understand.
And, of course, when I'm really tired - but take a nap and wake up feeling
ready to start fresh. So - depression is as bad as it gets for me.
Also, find a Celiac Support
group in your area, see a dietitian, and find Natural Food store(s) in
your area - we have one in town that is 10 minutes drive away - they have
a whole section in freezers and also in pkg mixes to pasta, etc. Remember,
eating fresh vegetables and fresh fruits help fill the gap. Everyone's
reaction to foods is different. Hang in there! ~~~
I think what happens is a
reaction to a lot of the non-gluten free grains/seeds, etc....I cannot
tolerate most of the stuff. If you happen to have calcium deposits in your
body and are reactive to oxalates, you can really mess yourself up by
eating buckwheat and a lot of other so called healthy foods. I highly
recommend the Low Oxalate Cookbook --for the oxalate info--not the recipes
if you think oxalates might be a problem. Lots of info on the net
about oxalates, but the cookbook is the best source of essential info. You
have to consider other possibilities---not just getting stuck on
identifying every molecule of gluten on the planet. Good luck. ~~~
I have heard that people can feel worse when they first go gluten free. This can last from a few days to a few weeks - sort of like a detox reaction? I know when I went gluten free I felt much worse for the first 3 days and then on day 4 I started noticing the first of many positive changes - I noticed my knees stopped hurting. If I had not been warned about the "worse before getting better" reaction, I might have given up on day 2.
~~~
weight gain! ~~~
I really don't remember
exactly how I was feeling worse - at the time I went GF, 4 years ago, I
felt so bad I thought I was dying. Fatigue and depression were two of my
many symptoms. I don't remember crying - but then, I have never cried much. I hold it all inside - that is a good solution, HA! All I remember now is that it felt worse for the first few days when I gave up gluten. I probably would be dead by now if I had not gone GF. I did not have GI symptoms other than reflux.
~~~
When my daughter and I had to
go gluten free we both were eating a lot more than normal. So much so,
that I called the doctor. We just couldn't get full. He told me it was our
bodies' way of catching up ~~~
Many people will feel
depression or almost a sense of grieving over having lost their best
friend "eating as they knew it". I think this happens more often in people
that did not have severe complications and had the joy of feeling like a
new human after on the GF diet for only a few days, or of not spending
hours in the john or afraid to even go out without knowing where the
nearest lav is. Those people are overjoyed at finding out their cure is
just eating a healthy diet. For those not so afflicted, it can be
upsetting. Also, ~~~
I believe in his book,
Dangerous Grains, Dr. Ron Hoggan mentions that gluten can act as an opiate
on the digestive system. When one removes it from their diet, they can
experience a period of withdrawal which can entail some irritability. I
did experience some mood swings once I eliminated gluten but I have never
regretted it! It does require perseverance so be patient with yourself as
your body adjusts but it is worth the temporary inconvenience. Good luck
and take care. ~~~
Yes, this is common. There
was a thread on the list about this a few months back. It seems that most
of us have some kind of negative reaction. My problem was mainly with
vomiting. Others reported other physical and emotional issues. The
problems clear up within a few weeks to a few months. ~~~
Going gluten-free means:
While your body is ridding itself of toxins, and trying to heal the villi, you usually do not feel so hot. It can take a year or two to feel better and see a difference. Depends on how young you are and how long you had CD. People who are older may not entirely heal, some do.
~~~
I would imagine most people
going gluten free have emotional/psychological effects, particularly those
who must go GF but never had bad symptoms. You are suddenly different from
most people, you are suddenly sort of sick and at higher risk for some
diseases. Also, it is a loss -- a loss you are angry about and must
grieve. The loss includes gluten-containing foods, and also all
spontaneity. Every social gathering or outing of any sort is a big hassle
-- phone calls, special arrangements, making your own food, having the
talk center around the fact you are or are not eating something.
Good points, I've wondered if the suicide rates with kids are related to cheating and mistake induced depressions as well or more so than the social issues. My daughter went into a severe depression when she did a gluten challenge. But she didn't experience the severe depression originally. Thanks so much for your reply.
~~~
Your body can actually set up
an addiction to gluten. Why - i don't know. the adverse reactions you
described are those associated with withdrawal. ~~~
I have been constipated after going gluten-free, otherwise my digestive system has improved, especially in the reduction of reflux. I have only been on this new and third restrictive diet for a month but I am a believer and I resisted a chance to cheat, a Christmas cake that I paid thirty-six dollars for.
Ok, I've heard of constipation before. Any ideas on why and how you resolved it or did it just resolve itself in time. Also did you substitute the gluten with the typical higher carb/sugar substitutes? Thanks so much for your reply?
No reply to this second question yet. Will post if a reply is received.
~~~
It could
be that in going g.f. you are adding more of something else (non-gluten)
that wasn't a problem before because 1) you immune system was overwhelmed
by the gluten, or 2) you weren't eating very much of it before...could be
almost anything. Obvious are corn, milk, soy. Less likely but possible,
are rice, tapioca. ~~~
It's been a long time but I
noticed positive changes immediately. They were so dramatic that my doctor
recommended going gluten free without the biopsy since it was before the
blood tests were developed.
That's great. You might not have had villi damage
anyway. A lot of people don't but they are damaged in some other important
places in their bodies. The villi gold standard dx is very misleading for
those who have the (serious and also autoimmune) intolerance reaction.
Thanks for your reply. ~~~
Many of us try to replace gluten with sugar. The result is “Candida Albicans". You'll find many articles on the internet about it and how to cure it. Have Happy holidays!
~~~
Going GF was a "mixed bag"
for me. There was both a miracle & a downside. The miracle was
complete amelioration of lifelong (50 yrs.) of severe constipation & IBS.
The IBS was of such severity that I had had 3 hospitalizations for it
alone, over the decades.
~~~
Yes, feel free to post my withdrawal symptoms to your website. You may want to add them in the following order:
May be tied to the withdrawal symptoms:
The withdrawal symptoms began on the fourth night of my gluten-free diet, and lasted for just over 2 weeks.
~~~
Wheat Harvest
Website readers are invited to comment or contribute their experiences. Send email to info@glutensensitivity.net or jka8168@sbcglobal.net Can gluten syndrome folks who are in close proximity to wheat harvest please give us a heads up on that situation?
If they are
affected and how/symptoms? How they managed their lives? What worked to minimize exposure and symptoms? Looking at all symptoms but particularly neurological, depression, general debilitation. Thanks folks, I'll summarize. Here is the current event that prompted this question A 26 year old man, the baby born when his mother was triggered for gluten syndrome by an emergency C-Section, is so reactive to gluten that even touching gluten to his mouth brings on a reaction. Going GF helped him immensely and he is very very strict. He lives in a heavy wheat producing area of Washington state. The haze of harvest in the valley is visible from the mountains nearby. He went GF in April, 08, 16 months ago, and got through wheat harvest without noticeable incident last summer. This year he crashed majorly, coinciding with wheat harvest. He couldn't work although he tried, he often had trouble sleeping and then getting up and going in the morning. He was in a miserable black pit of a strange serious depression, couldn't handle anything, no decisions, stress, snappy/touchy/tortured, anything is too much. This is not typical of him. He couldn't seem to talk about it, not even withn his cousin Su who has experienced this, see her story. Su agreed with him. She commented, "There is nothing to talk about. You just want to get well." This has been true of everyone who has experienced this depression. His mother also experienced these atypical crashes when she has had a gluten accident. She had a hard time keeping going last year at harvest time but didn't connect the dots until this year. However, it was difficult enough that she worked very hard on her nutritional profile last fall under the care of two functional medicine dr’s, Dr. Thomas O’Bryan of Chicago and a Dr. Moore in Washington state. She appears to not be so reactive now. This year's harvest did not bother her much. It has been suggested that strategies to heal the gut be the focus, including a diet and and environment of toxins and processed food, and addition of healing bone broths, sauerkraut, natural fats such as coconut, palm oil, and cod liver oil, casein free butter, and pastured animal fat, etc. to improve a gut that is too permeable. www.westonaprice.org Does anyone have any other suggestions. ~~~~~~~~~ I must avoid being outside during gluten harvestings and I also react to harvesting hay. Not sure if that is due to crop rotation using glutens on the same ground or whether it is a separate issue. But it causes me the same symptoms. I get sore throat, scratchy achey eyes, mucus proliferation and asthma attack (sometimes this turns into bronchitis), headache, digestive problems of all types including diarrhea, and neuro symptoms. Sometimes I do not have all these symptoms. I can sometimes just have sore throat, breathing difficulty instead of asthma, upset stomach instead of all digestive complaints, and neuro symptoms, for instance. Sometimes even fewer symptoms than that. and often when I am affected I do feel debilitated for a month or more. ~~ I have never had or sought testing. I cope by staying inside and going for rides to a lake, river, or state park to get some fresh air. I run my car on max-a/c instead of regular a/c. That way the air outside the car doesn't enter the car. I change the setting when I am 5 or so miles away from farming country. ~~ I read a research article 2 years or so ago which stated unresponsive celiac was often caused by airborne glutens and esp caused neuro symptoms, depression, and general debilitation. I doubt I could find it now, but it was from here at the forum and was released in June or July, I think. probably 2007, 2006, or 2005. They mentioned farmers as often affected by feeding their livestock, for instance. ~~ I have clients who experience the same thing in Kansas. It is likely a real thing. He may need to leave town during that time?? Dr. Ken (Fine) ~~ I'm living on Vancouver Island now, but when in Calgary I had asthma attacks when I drove past a working combine unless I put the air conditioning on "re-circulate" I often have breathing problems if I'm around airborne gluten. Ron Hoggan ~~ I moved to wheat country last year. I can provide an update on symptoms within the next month or so, as they begin harvesting. I'm also allergic to all of the grasses in the standard allergy tests, so last fall I struggled a lot, but I wasn't sure if it was just inhaling the wheat particles or if I was suffering from cross-contamination. ~~ I live in farm country in western Maryland. There are wheat fields all about. Different harvests have caused some or no problems. If the wind is high and I am home when the harvesting is done, I may experience loose stools for the duration of the harvest and a few days after. I've never had my antibodies checked. Some harvests, when there is no wind, seem to not cause much problem. Also the amount of moisture in the air seems to keep it down some. ~~ I don't know about gluten but it is certainly feasible. We lived for many years next to a corn field and when the corn was in bloom the pollen drove my husband nuts with seasonal allergy. He is corn allergic as a food so other aspects of the plant must other him too. I also have an asthmatic friend who is corn allergic, and Kathleen said when she was growing up they used to ride in the wagon when they were chopping cornstalks for animal fodder and the dust from the stalks always sent her into asthma attack, so I think it is certainly feasible. Hope you get some answers about wheat. ~~ I live in a rural village and did not even notice the wheat harvest this year, rye and barley are the same. As a child it was a terrible time for me but since going GF I can even walk thru a wheat field and not notice. Not all, but most of them. ~~ I live in a small farm town. Most of the farmers are dairy, but there's some wheat fields & a grainery nearby & I noticed that during harvesting season, I'm usually in the bathroom a lot more. ~~ I was diagnosed with gluten intolerance over 5 years ago. I have been gluten free since but have been reacting badly for two to three weeks during harvest. I revert back to diarrhea and heavy mucous , weakness and balance issues. I have a good air purifier and also a himalayan salt lamp going 24/7 but it helps me greatly during this time. But going out just to get a hair cut took me out for the rest of the day. So I keep myself house bound during this season. I live in south-eastern Idaho a lot of wheat farming as well as spuds.
Research that may apply to adverse reactions to the GF diet. Reperfusion injury and Gluteomorphin withdrawal theories.
Hypoperfusion and Ischemia Reperfusion injury theory
1. Hypoperfusion and ischemia/reperfusion injury: Note: this this only a suggestion
hypoperfusion - (hypo - less than quantity than normal) perfusion (the passage of a fluid through the vessels of a specific organ)
and/or
ischemia/reperfusion injury. - (Ischemia - reduced blood flow. Reperfusion - return of normal blood flow.)
This phenomenon can be compared to power surges that occur after electricity is reduced or cut off in a blackout or brownout. We run around and turn off our computers, microwaves, and sensitive equipment to protect them from damaging surges when electricity is restored. |
