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Adverse reactions to starting the gluten free diet
This page 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.
Here is research that may apply to adverse reactions to the gluten free diet.
1. Hypoperfusion and ischemia/reperfusion injury:
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. |
