Adverse Reactions
Adverse reactions to starting the gluten free diet or to gluten challenges/accidental exposure
or wheat harvest.
Jump to reactions to wheat harvest
Here is an update including links to forum searches concerning initial adverse reactions
Olive Kaiser www.theglutensyndrome.net, www.glutenreactivity.net or www.glutensensitivity.net
Also click here for interesting research that may be applicable.
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)
Going gluten-free means:
It took me 10 years to figure out why the same thing happened to me. With the gluten-free diet, you are no longer eating *fortified* cereals/breads, which means you are experiencing a reduction in dietary:
iron (ever notice the cereal box says: one serving provides 30% iron requirements)
and B complex (cereals and breads are always fortified with thiamin, riboflavin, folic acid, B6 ect..)
So, if you can, find a supplement that contains:
iron (15-20mg) and B complex (10-20 mg for each of the B vitamins)
Also: Calcium, magnesium, vitamin D are important if you are limiting dairy intake.
~~~
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.
When my 14yo (now 15) son was diagnosed, he had/has some depression and anxiety about being different from other kids, how he was going to deal with social gatherings, band trips, school lunch, college. I think it is a lot worse for kids than adults, who have learned not to care what others think or say, and who have a much greater degree of control over what they do. (My son had no symptoms.)
I have read research consistent with what I have personally seen/experienced -- you could probably find some on celiac.com. I even read a study that found that the mortality rate of kids diagnosed with celiac is much higher than expected, due to higher suicides and accidents. I think that study is on celiac.com, but if not you could probably find it by googling.
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.
Bean flours are not all created equal. The Eat Right for Your Type book lists about 2 dozen different types of beans but there's an assortment that's not good for each particular blood type.
Potatoes & potato starch in particular can also be the culprit.. I'm a Type O so when the book suggest white potatoes could be a problem I was skeptical but decided to go potato free for a couple of weeks. In less than I week the pain on the outside of my bones was gone...I'd been starting my day w 3 ibuprofen for that pain for years. The pain I get from a large baked potato is equal to 1 Tbs. or less of potato starch. Giving up potatoes was harder than going g.f. but I don't miss the daily inflammation & pain. I do pass on most g.f. products as well because the potato starch has such a potent effect.
You have to be your own detective. Attached is a copy of something I put in our NL a few years back. It gives info on food diary & other resource. Enjoy!
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.
But you asked about the adverse reactions/downsides of going GF. I did suffer increased joint pain & swelling, as well as muscle pain, my first couple of yrs. GF. It took me a while to consider that it might be something to do with GF diet. Note, I did have arthritis pre-exisiting GFD. But it got sig. worse. Anyway, turns out I am nightshade sensitive in addition to being gluten intolerant. We had done the GFD
as a family & tried to make it interesting for our celiac & gluten-allergic (IgE) teens. That meant increasing spicy ethnic dishes, which they love. So lots more of every sort of pepper than pre-GFD. Lots more potato & tomato, too. I would estimate that my personal potato consumption tripled on GFD. That incl. potato starch used in baking. Tomato doubled, and pepper intake quadrupled.
A nightshade-free diet trial (in addition to GFD) with subsequent challenges of nightshade foods (potato, tomato, bell & spicy peppers along with their related spices), eggplant) confirmed that the nightshades were responsible for the increased joint pain. Before the NF trial, during the trial & also the challenges, I scored every sore joint in my body on a 0-5 scale for pain, redness & swelling. Thus I had a baseline of "grand totals" for each segment. Nightshades roughly double my joint pain scores, which is a combination of factors incl. severity & number of joints affected.
The nightshade issue is not an allergy, but some "other" type of sensitivity. I have done both IgE & IgG testing for nightshades (& gluten also) & do not have antibodies.
In a sort of backward way, the GF diet helped me discover the NF sensitivity, but first I did go through a very painful period. To this day I am GF, NF, DF & EF.
Good luck with your research. I do enjoy the Gluten Sensitivity site. It is often mentioned at our local GIG meetings as a resource to help explain things to newbies. Best wishes.
- Overwhelming fatigue Website note: (described to me as "couldn't get out of bed")
- Brain Fog (this included lack of mental clarity; uncharacteristic forgetfulness, i.e. being unable to remember common words and to remember something I just did, like putting dinner away; and tongue-tiedness.)
- Black-pit depression
- Acute anxiety
- Shaking, feeling famished, and dizziness at meal times and needing to eat on the spot (this symptom resolved itself within a few days)
- A sudden intolerance to casein (i.e. milk, cheese, etc.). The reaction to casein mimicked my specific gluten reaction symptoms, including rosacea, eczema, bloating and gas.
May be tied to the withdrawal symptoms:
If they are affected and how/symptoms?
If they have tested their antibody levels, or other markers during that time?
How they managed their lives? What worked to minimize exposure and symptoms?
Looking at all symptoms but particularly neurological, depression, general debilitation.
Here is the current event that prompted this question
Does anyone have any other suggestions.
Hypoperfusion and Ischemia Reperfusion injury theory
1. Hypoperfusion and ischemia/reperfusion injury: Note: this this only a suggestion
This study underlines the importance of maintaining a strict gluten free diet here:
Mortality in patients with celiac disease and their relatives: a cohort study
This study compares 1072 celiac patients with 3384 of their relatives over 25 years.
Patients most likely to maintain a strict gluten free diet died half as often as their relatives.
Patients who blew off the diet completely and ate "normally" died twice as often as their relatives.
Patients most likely to cheat on the gluten free diet died 6 times as often as their relatives.
Why? Is continued ischemia/reperfusion injury a factor for those who are only partly compliant?
Regional cerebral hypoperfusion in patients with celiac disease.
Addolorato G, Di Giuda D, De Rossi G, Valenza V, Domenicali M, Caputo F, Gasbarrini A, Capristo E, Gasbarrini G. Institute of Internal Medicine, Catholic University, Rome, Italy. g.addolorato@rm.unicatt.it
Neurologic Disorders in Patients With Celiac Disease: Are They Mediated by Brain Perfusion Changes?: In Reply Nathanel Zelnik Pediatrics 2004;114;1734-DOI: 10.1542/peds.2004-1874
Ludovico Abenavoli, MD Lorenzo Leggio, MD Daniela Di Giuda, MD Giovanni Gasbarrini, MD Giovanni Addolorato, MD Institute of Internal Medicine Catholic University of Rome 00168 Rome, Italy
Range of Neurologic Disorders in Patients With Celiac Disease
Nathanel Zelnik, MD; Avi Pacht, MD; Raid Obeid, MD; and Aaron Lerner, MD
Mortality in patients with coeliac disease and their relatives: a cohort study
Giovanni Corrao, Gino Roberto Corazza, Vincenzo Bagnardi, Giovanna Brusco, Carolina Ciacci, Mario Cottone, Carla Sategna Guidetti, Paolo Usai, Pietro Cesari, Maria Antonietta Pelli, Silvano Loperfido, Umberto Volta, Antonino Calabró, Maria Certo, for the Club del Tenue Study Group
Gluteomorphin withdrawal theory
Opioid food peptides (Source Wikipedia) Bionity.com Life Science Encyclopedia entry
- Casomorphin (from milk)
- Gluten exorphin (from gluten)
- Gliadorphin/gluteomorphin (from gluten)
- Rubiscolin (from spinach)
A referenced explanation of gluteomorphins here
Julie Matthews Certified Nutrition Consultant www.nourishinghope.com
Autism article discusses gluteomorphins and casomorphins
Severe 6 week withdrawal and temporary measures that brought relief. Wm Shaw PhD
Search this article for possible length of "gluten withdrawal" and "gluteomorphins"
Scroll for this article on Gluten/Casein Peptides from Gluteomorphins and Casomorphins
Comments from the Feingold Association
Search this gfcfdet.com article for "gluteomorphins" and "withdrawal"
Search this Alternative Medicine Review for "gluteomorphins" and "withdrawal"
Search this document from Kirkman Labs for "gluteomorphin" and withdrawal"
Check page 42 of this "Clinical Psychology " article
Wikipedia article defines opiate peptides
Schizophrenia research - More coming
This article is available from: http://www.nutritionandmetabolism.com/content/6/1/10
* Corresponding author Full Text here