Jump to content
  • Sign Up

Archived

This topic is now archived and is closed to further replies.

92Aotearoa

Cds Who React To All Grains (incl. Rice & Corn)

Recommended Posts

As far as I can tell (and I've read a lot of the research) there is no evidence whatsoever nor any scientific reason for stating that none of those with celiac disease react to other grains, including some or even all of the ones considered "safe" for celiac disease patients (rice, corn, etc.) Nor have I seen any evidence (except in the case of oats) of a serious attempt to detect a possible range of variations in sensitivities. Interestingly, last time I checked, the investigations on oats still appear to be incompletely resolved (is it only contamination with wheat that seems to cause some to react?? etc.)

Every time I've seen someone claim that celiac disease patient's (supposedly) don't react to corn, rice, or some other "safe" grain the claim is based only on the "clinical definition" of celiac disease. But during the establishment of that definition, nothing, as far as I can see, was done to check the possibility that a subset of celiac disease patients might have more general reactions than the narrowly defined ones on which the clinical definition was was.

Disturbingly, every time I've tried to raise this issue, or seen others trying to raise it on various celiac disease boards, the idea was quickly rejected by the medical profession without any data or evidence whatsoever to bad that up other than the "clinical definition".

Consider that the clinical definition of celiac disease originally claimed that wheat was the ONLY grain which caused reactions. Now we know that that much isn't true. But what is still unanswered is the question of whether a significant minority of celiac disease patients have a broader range of reactions, even including some who react to any and all grains.

Since going grain-free decades ago I have met about a dozen or so other celiac disease patients who also react to any grain at all. In most cases their recognition of that fact was greatly delayed by, in some cases very aggressive, insistence that such additional reactions were not possible. Most of us had found that our health was still pretty poor which gluten free but not grain free and improved remarkably once all grains were eliminated.

I would therefor strongly suggest that anyone with celiac disease who is not satisfied with the state of their health do a trial of a few weeks without any grains at all in their diet. If significant improvement results, one can then try reintroducing the "safe" grains one at a time (I'd recommend waiting at least a week or two between) to see whether some or none of them could be tolerated.

Medicine works on categorization and in many cases that categorization is incomplete (for example when only wheat was considered a provoking agent). Unfortunately there appears to be a tendency to, when the categorization is "working well enough" to stop further developing it.

A major limitation in the utility of the application of any body of knowledge is the degree to which one is aware, or not aware, of its limitations.

One of the most destructive blocks to the efficient application of knowledge is a tendency to think that one knows something to be false when, in reality, one just does not know that it is true and cannot see any reason for supposing that it is. Some of our greatest advances have resulted when someone had to courage to test something that was generally "known" to be false.

If anyone has any evidence to support the contention that no significant proportion of celiac disease patients react to the "safe" grains or even to all grains I would really like to see it. (Please not that that is entirely different from the observation that most celiac disease patients do not react to the "safe" grains.)

IMHO properly addressing this issue could, for many of us, make the difference between indifferent or generally poor health and excellent health.

An inappropriate certainty is the bane of progress.

Share this post


Link to post
Share on other sites

Your post got my attention. I am going to post part of my story on the off chance it's of interest to you. It's not a direct response, but it relates to intolerance of all grains. I have discovered through elimination diets that my 10-month-old cannot have any grains, even through breastmilk (human milk transmits proteins).

I am the mom of three boys, 6, 3 and 10 months. I am relatively new to Celiac, but I have a lot of experience with elimination diets due to my kids' predisposition toward atopy (all have had various degrees of the triad of infant eczema, asthma, and food allergies of the IgE/anaphylactic kind). RAST blood tests for children under 1 year of age are not entirely reliable, so nursing moms of atopic kids sometimes rely on elimination diets to control reactions, or they wean (if they can find a formula that does not cause a reaction).

Facial eczema in infants often develops in the 3-4 months time frame and is often predictive of later food allergy. When my youngest son developed facial eczema at 4 months while exclusively nursing, I immediately eliminated some common culprits: milk and eggs. Tree nuts, peanuts, fish and shellfish had already been eliminated in the prenatal period, as they are also allergenic and relatively easy to avoid. His eczema did not clear up, so I started rotating different foods out in an attempt to discover the culprit or culprits.

At six months, I cautiously introduced cereals, rice one week and then oatmeal the next. He had a severe vomiting, hives and diarhhea response to oatmeal cereal after the third or fourth exposure. He was treated in the ER with Benadryl, and then doses were repeated over 24 hours at intervals when the effects would wear off and hives would return. After that bad incident with oatmeal, he patently refused the rice cereal as well.

At this point, I was thinking only of IgE-mediated food allergies, the kind understood by board-certified allergists. I had a pediatric allergist do RAST and skin-prick tests for some common allergens plus the suspects, but nothing turned up besides a small positive for rice that was dismissed because rice allergy is "rare" in an American child. His tests also indicated he had a low overall IgE...which is usually elevated in food allergy. The allergist really didn't think he had food allergies.

I did a week-long elimination diet of the "top eight" allergens (plus two additional we had already observed, oatmeal and rice). Those eight were egg, milk, soy, wheat, tree nuts, peanuts, fish and shellfish. It's important to note that I did not eliminate all *gluten*, as I was consuming products like corn flakes, etc., that contained barley malt. His bad eczema changed a little but actually worsened on one new area of his face. I had begun noticing the grains trend, and I wondered to myself whether my heavy use of corn products that week might have caused the new area to flare. Stymied by the lack of response, I added soy and wheat back to my diet, even in increasing amounts because I was removing other foods on rotation. I saw evidence of foods being the culprit, but I didn't have the specific foods figured out.

After about a month on a gluten-HEAVY diet, I personally started suffering from more overt symptoms of Celiac disease (in hindsight, I had atypical symptoms my whole life). Weight loss, rash on my elbows, mouth sores, fatigue, brain fog, etc. I started researching symptoms and found out about gluten intolerance. I did a quick two-day trial diet and had amazing personal results. I went back on gluten and arranged for a fast blood test, which came back positive. I had my six-year-old tested, and he also came back positive for EMA, AGA-IGA, AGA-IGG, and Reticulin (all Celiac markers).

After the blood test, I dropped all gluten out of my diet. This was in early March, about five or six weeks ago. On the day I dropped gluten, my 10-month-old was breastfed only and had weeping, sometimes bleeding eczema on the right side of his face, and another spot on the left cheek (the spot I thought might be corn-related). This was how he had been for a while. We had tried weaning him to supposedly hypoallergenic formulas, but they all caused him to break out worse. (All contained some corn proteins.)

Two days into the gluten-free diet, his right-side rash was changing, looking less like one mass of eczema and more like spots. A little like DH, actually. It didn't look *better*, just different. But as days and weeks went on, it was definitely healing. Family members started noticing, saying "it looks like you have it figured out." It stopped weeping actively. But the left cheek spot was not responding. And, it did not respond until I completely removed corn from my diet...no soft drinks, no sorbitol, etc.

Now, with all grains out of my diet, and after six months of elimination and experimentation, my son's skin rashes are finally cleared (mild discoloration remains but it is getting smoother and fainter by the day). His allergist told me at six months that "some babies just have eczema, and you won't figure out the triggers." We're lucky in that we have seemingly figured out the triggers.

I have no idea whether my infant son has Celiac disease, IgE food allergies, both or neither. I do know that a.) his skin reactions show evidence of some type of intolerance for all grains (he eats other starches like potatoes without problem). b.) I personally react to gluten, likely have Celiac, and have other intolerances I am just starting to figure out (coconut is one, corn and soy may be others); c.) my six-year-old is living proof that one child can have both IgE type food allergies and Celiac disease.

Once my son is weaned, I will be curious to reintroduce both corn and rice into my diet. Since I have not had them for some time, it should be clear if they cause problems for me personally.

Sorry for the length of this post. It's just that I don't often hear of people other than my son who have a problem with all grains.

April

Share this post


Link to post
Share on other sites

For what it's worth, there is another condition out there that can cause GI reactions to foods in infants. It is called Food Protein-Induced Enterocolitis Syndrome, or FPIES. Infants can have FPIES to multiple foods, including cereal grains.

"Cereals, vegetables, and poultry meats, typically regarded as of low allergenic potential, must be considered in the evaluation of FPIES, particularly in infants previously diagnosed with FPIES to cow

Share this post


Link to post
Share on other sites
Your post got my attention. I am going to post part of my story on the off chance it's of interest to you. It's not a direct response, but it relates to intolerance of all grains. I have discovered through elimination diets that my 10-month-old cannot have any grains, even through breastmilk (human milk transmits proteins). ---

----

I've seen references that claim that antigens from the mothers diet can be present in milk, so what you eat can definately make a difference.

IN ADDITION:

Many toxins are actively excreted in breast milk. Sounds a bit vicious (why would "mother nature" treat infants so!" but makes evolutionary sense when you think a bit about it: 1) for many toxins (especially fat soluble ones) there is no other efficient means of excretion (tough luck for males!). 2. it makes more "sense" (in terms of evolution") for a breast-feeding infant to get sick and/or die rather than the mother (in which case the infant would also die anyway plus probably any other children along with it and the mother).

This means of excretion is so effective that it is quite possible for the mother to never even become ill from a toxin to which she is exposed while the infant she is nursing dies from it.

For an interesting example of such a toxin, do a google search on "Nancy Hanks" (Abraham Lincoln's mother) and "white snake root"! This plant delayed for a long time European settelement in parts of the US because of inability to understand the periodic plagues of infant deaths that afflicted the settlers (but not the natives). (The plant was used for fodder for cattle but only during times of drought when higher quality fodders were not available.) Because people drank milk all of the time but only died some of the time it took quite awhile to identify the problem.

The very important point here is that something that the mother eats (or is otherwise exposed to!) can be making her nursing infant ill even when it is not making her ill!

FOOD DIARY: Taking the above point into consideration, it is a very good idea, IMHO, for the mother to keep a very complete diary of everything both she and her child eats, all other possible exposures (if you're not sure you can think of all the likeliest ones, get in touch with your local environmental groups. They'll know a great deal of them!) Also list all symptoms with accurate times for everything and be as quantitative as possible.

It is massively useful to be able to go back thru the diary when you become suspicious of some new thing. Only by this means did I originally identify grains (and temporarily milk) as the root cause of my problems (and then regained over 40 desperately needed pounds in about the same number of days!

=== ===

I am the mom of three boys, 6, 3 and 10 months. I am relatively new to Celiac, but I have a lot of experience with elimination diets due to my kids' predisposition toward atopy (all have had various degrees of the triad of infant eczema, asthma, and food allergies of the IgE/anaphylactic kind). RAST blood tests for children under 1 year of age are not entirely reliable, so nursing moms of atopic kids sometimes rely on elimination diets to control reactions, or they wean (if they can find a formula that does not cause a reaction).

---- ----

IMHO, tests can be very useful in terms of suggestions as to what to suspect. But because of poor correlation with what one actually reacts to, again IMHO, one should then very carefully and SYSTEMATICALLY (i.e.: only one variable at a time!) test the suspicions. And, most especially, do NOT rule something out just because it didn't show up on some tests!

Tests generally test for reactions based on some particular mechanism. There are numerous possible mechanisms which could cause reactions to foods, many of them not even involving the immune system (examples: foods that are contaminated (aflatoxin was a widespread problem in grains many years ago), foods that act as good feedstock for intestinal pathogens, etc etc.) Keep an open mind and pay attention to what actually provokes problems even when that may "contradict" the results of tests! Almost no tests are 100% (or even that close to it) accurate EVEN for things based on the mechanism they test for! (Gene tests being a noteable exception!)

PS: IMHO your kids are very lucky to have such a diligent and thorough mother! I've seen all too many mothers who can't be bothered to supply a gluten free diet for their kids even after they've been definitively diagnosed (easier to just rationalize it away) much less go to considerable trouble to identify the problem. ((This appears to be a significant problem in cultures that place a great emphasis on food and social activities around it.))

===== ========

Facial eczema in infants often develops in the 3-4 months time frame and is often predictive of later food allergy. When my youngest son developed facial eczema at 4 months while exclusively nursing, I immediately eliminated some common culprits: milk and eggs. Tree nuts, peanuts, fish and shellfish had already been eliminated in the prenatal period, as they are also allergenic and relatively easy to avoid. His eczema did not clear up, so I started rotating different foods out in an attempt to discover the culprit or culprits.

At six months, I cautiously introduced cereals, rice one week and then oatmeal the next. He had a severe vomiting, hives and diarhhea response to oatmeal cereal after the third or fourth exposure. He was treated in the ER with Benadryl, and then doses were repeated over 24 hours at intervals when the effects would wear off and hives would return. After that bad incident with oatmeal, he patently refused the rice cereal as well.

At this point, I was thinking only of IgE-mediated food allergies, the kind understood by board-certified allergists. I had a pediatric allergist do RAST and skin-prick tests for some common allergens plus the suspects, but nothing turned up besides a small positive for rice that was dismissed because rice allergy is "rare" in an American child. His tests also indicated he had a low overall IgE...which is usually elevated in food allergy. The allergist really didn't think he had food allergies.

--- ----

One respect in which IMHO our (USA) culture is exceedingly remiss is in weaning children, especially in the past. Look at the innumerable pictures and images of kids being feed and strenuously rejecting the food just as hard and emphatically as they possibly can and the parent totally ignoring all of it because the kid is "just playing with his/her food", "just acting up", etc! Too many people listening too much to so-called (and often self-appointed!) "experts" whose advice often is completely at odds with both the previous and subsequent generation of "experts"!

There is an exceedingly large degree of genetic variation in our species and a great deal of it has effects on how we handle various diets (celiac disease is just a small part of it!). This is not at all surprising considering the vast range of environments and diets we have evolved in and with.

"Jack Sprat could eat no fat, his wife could eat no lean...." Note the rhyme says _could_ not _would_!

===== =====

I did a week-long elimination diet of the "top eight" allergens (plus two additional we had already observed, oatmeal and rice). Those eight were egg, milk, soy, wheat, tree nuts, peanuts, fish and shellfish. It's important to note that I did not eliminate all *gluten*, as I was consuming products like corn flakes, etc., that contained barley malt. His bad eczema changed a little but actually worsened on one new area of his face. I had begun noticing the grains trend, and I wondered to myself whether my heavy use of corn products that week might have caused the new area to flare. Stymied by the lack of response, I added soy and wheat back to my diet, even in increasing amounts because I was removing other foods on rotation. I saw evidence of foods being the culprit, but I didn't have the specific foods figured out.

After about a month on a gluten-HEAVY diet, I personally started suffering from more overt symptoms of Celiac disease (in hindsight, I had atypical symptoms my whole life). Weight loss, rash on my elbows, mouth sores, fatigue, brain fog, etc. I started researching symptoms and found out about gluten intolerance. I did a quick two-day trial diet and had amazing personal results. I went back on gluten and arranged for a fast blood test, which came back positive. I had my six-year-old tested, and he also came back positive for EMA, AGA-IGA, AGA-IGG, and Reticulin (all Celiac markers).

After the blood test, I dropped all gluten out of my diet. This was in early March, about five or six weeks ago. On the day I dropped gluten, my 10-month-old was breastfed only and had weeping, sometimes bleeding eczema on the right side of his face, and another spot on the left cheek (the spot I thought might be corn-related). This was how he had been for a while. We had tried weaning him to supposedly hypoallergenic formulas, but they all caused him to break out worse. (All contained some corn proteins.)

Two days into the gluten-free diet, his right-side rash was changing, looking less like one mass of eczema and more like spots. A little like DH, actually. It didn't look *better*, just different. But as days and weeks went on, it was definitely healing. Family members started noticing, saying "it looks like you have it figured out." It stopped weeping actively. But the left cheek spot was not responding. And, it did not respond until I completely removed corn from my diet...no soft drinks, no sorbitol, etc.

Now, with all grains out of my diet, and after six months of elimination and experimentation, my son's skin rashes are finally cleared (mild discoloration remains but it is getting smoother and fainter by the day). His allergist told me at six months that "some babies just have eczema, and you won't figure out the triggers." We're lucky in that we have seemingly figured out the triggers.

I have no idea whether my infant son has Celiac disease, IgE food allergies, both or neither. I do know that a.) his skin reactions show evidence of some type of intolerance for all grains (he eats other starches like potatoes without problem). b.) I personally react to gluten, likely have Celiac, and have other intolerances I am just starting to figure out (coconut is one, corn and soy may be others); c.) my six-year-old is living proof that one child can have both IgE type food allergies and Celiac disease.

Once my son is weaned, I will be curious to reintroduce both corn and rice into my diet. Since I have not had them for some time, it should be clear if they cause problems for me personally.

Sorry for the length of this post. It's just that I don't often hear of people other than my son who have a problem with all grains.

April

----------

Great post! Nothing whatsoever wrong with long when it's useful and informative!

RE: rice and corn: do try them eventually but be prepared for a possible disappointment. I tried after 15 years without any exposure to any grains, starting with the "safest" ones and still could not tolerate even rice or corn. (interestingly I got different symptoms from them than from gluten containing grains.)

I strongly suspect that things in the environment initiate the "expression" of celiac disease (and that aflatoxin is one of them! (at the time of my sudden extreme worsening of celiac disease there were flours I was using that had tested at 8,000 times the permitted level of aflatoxins!). I further suspect that what you are eating at the time of exposure to the "initiating" influence determines what range of grains you will react to. (I and others I've talked to that react to all grains were eating a very wide variety at the time of initial problems).

Keep it up! IMHO you are very much on the right track and will eventually get good control of the problem.

PS: I've found that it is far better to avoid processed foods entirely (much better for your health anyway!), most especially the "gluten free" ones, which appear to be particularly deadly to those of use who react to all grains.

All very much JMHO!

PPS: been and lived in both places many years. If you have celiac disease, it's VASTLY better to live in New Zealand than in the United States (due to massive differences in attitudes and support (or the lack thereof)) on the part of the government.

Share this post


Link to post
Share on other sites

I am from the US. I am into my seventh year off suffering since becoming gluten free. Through elimination I feel I can correlate rice and corn to migraines. Now that I have been completely grain free for 6 months, the medical community now blames my suffering of diet defieciencies, they are encouraging me to add grains. I am full of fear, every grain I have tried on the 4 year trek of elimination has resulted in suffering.

I have not had processed foods, nor eaten in a resurant for several years except for a lettuce only salad.

The medical community blames chronic pain on my lack of grains, even though my vitamin and mineral levels seem in normal range.

I used hydrocodone for the chronic pain for one year. Now they blame the meds for creating the pain. I have been off all pain meds for 2 months. Going crazy with the return of debilitating pain. No grains has helped. No pain meds cleared some fog but leaves me mental ready but physically unable to participate. Everything is a chore, getting dressed, eating, going to the bathroom. Accomplishing those has me calling it a good day.

Anyone with chronic pain finding relief from any other treatment?

I am so tired from not sleeping because of pain issues. Not doing anything because of pain issues.

I tried accupuncture but the nickel caused more problems than relief.

Learning to endure, but feeling like I'd rather quit if there is no hope for any pleasure in life.

Share this post


Link to post
Share on other sites

MORE on why grains are most definately NOT essential to our diets and why we can get along perfectly well without any of them at all!:

****

There is no essential or important nutrient present in grains that cannot be found in ample amounts in non-grain foods. The total elimination of all grains from a diet cannot be responsible, in and of itself, for any nutritional deficiency. Nutritional deficiencies resulting from the elimination of all grains from the diet would, therefore, be a result of failure to adequately balance the diet eaten rather than a result of the elimination of grains.

[[NOTE that, while there are some "phytonutrients" present in grains that are considered to have good health properties, they (or a very close and equivalent analog) are all present in other (non grain) foods. (and as far as the "fiber" thing goes, the fiber in grains is not all that good and there are other fibers that are far more beneficial).

I would highly recommend getting a copy of "Nutrition Almanac" by Kirschmann & Kirschmann. This book (a much earlier edition) was largely the reason that it only took me about as many days to regain over 40 desperately needed pounds once going on a grain free diet (and almost all of the gain was muscle) And I do mean NO grains: i.e.: no corn, rice, millet, sesame, barley, rye, oats, wheat or any member of the botanical grouping at all (NOTE: many refer to corn as a "vegetable" but that is a non scientific "food" grouping and just flagrantly wrong.)

This book was exceedingly valuable to me in two very important ways:

1) by reading the lists of deficiency symptoms for each nutrient it became massively apparent which ones I was severely lacking (A, E, D, essential fatty acids (EFAs) and literally every B vitamin deficiency known to man (and in severe form) except for the "butterfly rash" (probably only lacking because I never went out in the sun because of severe photophobia, so nothing to trigger it).

2). It enabled me to work out a very well balanced and extremely "nutrient dense" diet without including any grains whatsoever. (I emphasized foods that were exceptionally high in one or more of the nutrients I was particularly lacking in.)

[[[it has always seemed to me to be a grossly negligent omission that high levels of appropriate nutritional supplements are not routinely recommended for patients recovering from celiac disease! When the uptake of nutrients (especially vitamins and EFAs) is impaired taking high dose supplements can allow uptake of larges amounts even with the impairment. This leads to far more rapid recovery. These nutrients are needed for the recovery and with impaired uptake and no supplements the deficiency of them very greatly slows recovery. (I had one doctor insist that I could not possibly have celiac disease because she'd never seen one recover remotely as quickly. But then she'd never seen one that both eliminated ALL grains, ALL processed foods, ALL dairy (for the first 6 months) and take very large doses of supplements.]]]

Note that when starting the NO grains whatsoever diet (and, because no processed foods whatsoever no HIDDEN grains either!) I was over 40 pounds underweight and severely ill. And on that diet I regained ALL of the lost weight in only 7 weeks and was, in the words of the doctors, "outrageously healthy" and "in prime athletic condition". And I ate that diet for over a quarter of a century and remained in exceptionally good health.

That grains are NOT essential or even very important to a good diet is not at all surprising considering that they were only added to out diets a scant 10,000 years or so ago - a mere blink of the eye in evolutionary terms and far far too short a time for them to have become essential. (In fact the very presence of celiac disease proves that we haven't even yet adapted to the point of being able to fully TOLERATE them yet! (Eons away from being essential!)

Share this post


Link to post
Share on other sites

I tried after 15 years without any exposure to any grains, starting with the "safest" ones and still could not tolerate even rice or corn. (interestingly I got different symptoms from them than from gluten containing grains.)I too, get different symptoms from corn, rice, and soy, than I do the regular glutens. Gluten gives me diarrhea, the other grains constipate me.

I tried accupuncture but the nickel caused more problems than relief.I had never heard this. I didn't even think about it. I had honestly thought about accupuncture, but I also have a nickel allergy. I knew I had a problem with nickel when wearing pierced earrings. Last summer I purchased a magnet ankle bracelet, knowing that magnet itself is not an allergen. I wore it for a couple of hours and my ankle swelled twice it's size. Then I realized the little beads between the magnets were not all plastic. I was reacting to the nickel in the little metal beads.

It sucks being allergic or intolerant to so many things.

Share this post


Link to post
Share on other sites

I am also intolerant to all grains. I get almost the same reaction from rice as I do from gluten grains. Grains are lectin foods, and not only am I intolerant to grains, but all other lectins as well (see the link in my signature for more info).

Budew, you may be intolerant to all lectins, or at least more than just grains. For instance eggs give me an awful reaction, and legumes cause a lot more bloating and gas for me than they do for other people. And the nightshades are known to cause symptoms of arthritis as well.

Please don't listen to the doctors. If you know that grains make you ill, just don't eat them. Who cares what those ignorant doctors say!

Foods high in salicylic acid can also cause awful pain. My joint pains and back pain, as well as gastrointestinal issues were caused by lectin foods. But my muscle pain was caused by salicylates.

Follow the links in my signature to see if maybe your answer lies in more food intolerances. And then do an elimination diet.

Of course, if you eliminate that many foods, you do need to take high quality supplements (I take the Nu-Thera hypoallergenic multi from Kirkman Labs, which are guaranteed not to contain any of the things I am intolerant to.

Share this post


Link to post
Share on other sites

Thanks for the support and information.

I read the salicylate link and bought the celiac disease. I have cleaned up my environment and eat a very low salicylate diet. Its helped some of the pain and reduced flushing.

I read about Lectins too. I cut back for several months. I am adding some legumes and seem to be tolerating them well.

Being free of nightshades has reduced many allergic type reactions. I have been able to add back some white potato.

Being grain free has ended many gastro problems and migraines for the most part.

I am vegetarian, and have not eaten eggs in decades.

I was lactose free for a year but now tolerate full fat dairy products. I think my intestine has healed.

I am questioning my homeopathic doctor when he suggestes mega doses of minerals and suppliments. I ask for a levels test before taking the stuff. So far I have not shown any deficiencies.

I will need a lot of convincing before I try a grain. Personally I'd like to test Soy next.

I do take flaxseed oil, probiotics, CoQ10, l-glutamine, and citrucel daily.

I will speak to a nutritionist, get Upper GI results, see my homeopath and my family physcian in the next 8 weeks. Hopefully they will stop guessing, or blaming me when it comes to the issues of pain, and the fevers I still deal with daily.

Sometimes I need to remind my self how far I have come, and that things are getting better, eventhough the end still is not here.

Thanks to everyone who makes me feel like I am a part of a group, and not the only one out here dealing with these problems : )

Share this post


Link to post
Share on other sites

I just joined your group Monday, one of the main reasons was to find others who have problems with mulitple grains. I have problems with all the monocots in the grasses/grains family, which include: wheat, rye, barley, rice, oats, corn, sorghum, millet and others. I have tolerated the dicots buckwheat and quinoa, but I feel I may be starting to react to them also. I am not currently having a problem with some bean flours. I have not been tested for the many other medical things that could cause problems, I hope to be tested soon.

If anyone has looked into the botanical side of this issue I'd like to hear from them.

A warning much of the medical dextrose is made with corn. I know that Kaiser in Northern California was uses a corn based dextrose in all their facilities in 2005.

Share this post


Link to post
Share on other sites

Thanks for all your sharing. I suspect I may eventually be in this group, however, I am going to give the gluten-free a good try first hoping other allergies will settle.

At one time I tested food after food, and was allergic to everything both by provocative testing in the allergist's office, and my own testing at home (fasting until symptoms clear, then adding one organic food at a time watching for symptoms.) I determined I could not avoid, and went to a 4 day rotation diet. Nothing really kept me clear. Was also very sensitive to chemicals. My allergist said it was like something attacked my immune system.

Still looking for the pieces to the solution. I think gluten-free may turn out to be one of the answers.

Many allergists are not very helpful if a food doesn't give a IgE reaction--they'll flatly state you don't have food allergies. I have been fortunate to have an excellent one who is great with both food intolerances and chemical intolerances.

Share this post


Link to post
Share on other sites
Guest AlabamaGirl

I don't tolerate most grains well, though I wouldn't exactly say that I'm *intolerant* to all of them. Wheat, oats, rye and buckwheat are definitely no-nos. I can eat a small amount of oats, but after that I have symptoms similar to gluten. I could not eat rice at all for a while, but seem to tolerate it in small amounts now. Corn doesn't seem to pose a problem.

BUT ...

I think my body type is more efficient and healthy without grains, so I pretty much stay away. I do notice a huge drop in energy level when I eat cornflakes for breakfast. Since this stuff basically turns to sugar, this may be an insulin thing. Whatever causes the lousy feelings when I eat grains doesn't matter -- apparently, my body just doesn't like them.

So chalk me up to one more celiac who can't eat most grains!

Share this post


Link to post
Share on other sites
I have been off all pain meds for 2 months. Going crazy with the return of debilitating pain. No grains has helped. No pain meds cleared some fog but leaves me mental ready but physically unable to participate. Everything is a chore, getting dressed, eating, going to the bathroom. Accomplishing those has me calling it a good day.

Anyone with chronic pain finding relief from any other treatment?

I am so tired from not sleeping because of pain issues. Not doing anything because of pain issues.

I tried accupuncture but the nickel caused more problems than relief.

Learning to endure, but feeling like I'd rather quit if there is no hope for any pleasure in life.

i am so sorry to keep responding to all ur posts....but i have to spread the word.

IMS - intramuscular stimulation http://www.istop.org

your story is IDENTICAL to my DH!!!!! please try this!!!!! maybe you can get your life back too!!!

please everyone living in pain: find a GOOD ims practitioner....do anything within your power to get to one and try this miracle.

email me if you want to hear about my DH's experience beating DEBILITATING chronic pain: celena12@shaw.ca

Share this post


Link to post
Share on other sites
I am from the US. I am into my seventh year off suffering since becoming gluten free. Through elimination I feel I can correlate rice and corn to migraines. Now that I have been completely grain free for 6 months, the medical community now blames my suffering of diet defieciencies, they are encouraging me to add grains. I am full of fear, every grain I have tried on the 4 year trek of elimination has resulted in suffering.

I have not had processed foods, nor eaten in a resurant for several years except for a lettuce only salad.

The medical community blames chronic pain on my lack of grains, even though my vitamin and mineral levels seem in normal range.

I used hydrocodone for the chronic pain for one year. Now they blame the meds for creating the pain. I have been off all pain meds for 2 months. Going crazy with the return of debilitating pain. No grains has helped. No pain meds cleared some fog but leaves me mental ready but physically unable to participate. Everything is a chore, getting dressed, eating, going to the bathroom. Accomplishing those has me calling it a good day.

Anyone with chronic pain finding relief from any other treatment?

I am so tired from not sleeping because of pain issues. Not doing anything because of pain issues.

I tried accupuncture but the nickel caused more problems than relief.

Learning to endure, but feeling like I'd rather quit if there is no hope for any pleasure in life.

I also react to rice and corn. I have suffered from ongoing pain and have found that having my medications compounded can solve some of the problem with pain and my reactions to grains. Hydrocodone can be compounded. Darvocet cannot for some reason. I have taken Darvocet for the last few years and am aware that this medication is causing some of my symptoms. I am afraid to request this from my doctor, but will try this month to switch to Hydrocodone. I also take Elavil at night for pain. This also can be compounded. Tastes horrible. There are compounding pharmacies all over the country and my insurance covers the cost. Try to exercise if possible, even a short walk can release endorphins that can alleviate pain for a short time. Hopefully this information helps you.

Share this post


Link to post
Share on other sites
----------

(interestingly I got different symptoms from them than from gluten containing grains.)

Would you mind sharing the specific reactions(s) you experience?

As of about a year and a half ago, I've started to react to other grains. In these cases, the reactions are tightness in my throat and something on the right side of my neck under the jawbone that swells up.

I'd be very interested in knowing if other people experience similar reactions. Unfortunately all too often, people just post that they "react to other grains" without saying whether it is a typical gluten-type reaction or something else.

Thanks!

Share this post


Link to post
Share on other sites
Would you mind sharing the specific reactions(s) you experience?

As of about a year and a half ago, I've started to react to other grains. In these cases, the reactions are tightness in my throat and something on the right side of my neck under the jawbone that swells up.

I'd be very interested in knowing if other people experience similar reactions. Unfortunately all too often, people just post that they "react to other grains" without saying whether it is a typical gluten-type reaction or something else.

Thanks!

Corn causes stomach pain and the"D" for me. Rice, especially brown rice causes migraines, muscle pain and gas. I used to eat boxes and boxes of Cocoa Pebbles, but always had bloating and gas. didn't put 2 and 2 together until I ate some brown rice bread and had the same reaction but more severe. Since I have stopped both, i have felt better. It just is not worth the pain and discomfort with either. I have found flax cereal and buckwheat/coconut flour pancakes to be awesome substitutes for breakfast. I have also switched from New Grist Beer to Redbridge. Even though I have found substitutes, I'm not losing any weight!

Share this post


Link to post
Share on other sites

Nice to know that there're others like me!

I get varying symptoms with other grains (depending on which one it is), including horrible bloating, stomach pain, "heaviness", brain fog and tremendous lethargy. With corn, especially processed corn, I also get migraines. I don't seem to tolerate any in small amounts,even...I've tried rotating a little here and there in my diet without any luck. I feel so much better not eating any of them that I'm quite content to keep doing so!

Re. previous mention/discussion about nightshades; Potatoes do me in - I get the weirdest pain under my rib-cage and bloat to high heaven, and tomatoes sap the energy right out of me...I spent the last 2 days in bed as a result of having a soup which was heavy on tomatoes. I wasn't sure before, but now I'm convinced I need to avoid them as well...

I've seen sprouted rice on the DHC website; has anyone ever tried eating sprouted rice? Would sprouting it make it easier to digest?

Share this post


Link to post
Share on other sites

It's nice to know that other people can't eat any grains at all. I can only eat a few whole foods and I'm worried that in the future I won't be able to eat them, either. I have the terrible blister rash (over 2 months now). I tried Dapsone, but felt very fatigued so I stopped it and the rash multiplied unbelievably. And if I avoid all grains and the nightshades which I am allergic to (blood test), I still feel bad...just not as bad. I was hoping that seeing an allergist would help, but he didn't know what else to do after a couple of months and referred me to a dermatologist. So, now I am just miserable, eating a few fruits and vegetables and chicken with this ridiculous oozing rash all over :-( Sooooo burned out and sick of being sick. :angry:

Share this post


Link to post
Share on other sites

It's nice to know that other people can't eat any grains at all. I can only eat a few whole foods and I'm worried that in the future I won't be able to eat them, either. I have the terrible blister rash (over 2 months now). I tried Dapsone, but felt very fatigued so I stopped it and the rash multiplied unbelievably. And if I avoid all grains and the nightshades which I am allergic to (blood test), I still feel bad...just not as bad. I was hoping that seeing an allergist would help, but he didn't know what else to do after a couple of months and referred me to a dermatologist. So, now I am just miserable, eating a few fruits and vegetables and chicken with this ridiculous oozing rash all over :-( Sooooo burned out and sick of being sick. :angry:

Don't discount the benefit of a dermatologist. I just wen to one on Friday after having this terrible rash since last Christmas. Started a med on Friday and the rash is almost gone! Maybe only a few more days on the cream and it'll be good as new. It was horribly itchy and blistery and open wounds. Getting your rash under control will help you focus on getting your food thing worked out.

Share this post


Link to post
Share on other sites

It's nice to know that other people can't eat any grains at all. I can only eat a few whole foods and I'm worried that in the future I won't be able to eat them, either. I have the terrible blister rash (over 2 months now). I tried Dapsone, but felt very fatigued so I stopped it and the rash multiplied unbelievably. And if I avoid all grains and the nightshades which I am allergic to (blood test), I still feel bad...just not as bad. I was hoping that seeing an allergist would help, but he didn't know what else to do after a couple of months and referred me to a dermatologist. So, now I am just miserable, eating a few fruits and vegetables and chicken with this ridiculous oozing rash all over :-( Sooooo burned out and sick of being sick. :angry:

I will share that I too had the painful oozing rash of dermatitis herpetiformis. I saw many dermatologists and was given 10 different antibiotics and creams and nothing worked. It took me 7 years to figure out it was gluten related...by finding it on this site. The importatnt thing to know is that eliminating gluten did not quickly clear the rash. It can take 6 months to 2 years for the antibodies in your skin to stop reacting. A dermatologist can do a biopsy of the lesion..outside the actual lesion or next to it is where the antibodies will be found. I didn't do that, but have read that it can be done. I have found that the sores are way better with no oozing and less pain but first I had to eliminate iodine. I found that by reading the posts on DH and learned that iodine makes the sores react just as if one had eaten gluten. It is true for me. I am using sea salt and am seeing a big huge difference. Another mistake I made was using ibuporofen to control the pain of the sores. I learned that I am allergic to salicylate (aspirin) and those allergic to aspirin cannot take Ibuprofen. NSAIDS can cause serious skin reactions or rashes very similar to the Dermatitis Herpetiformis caused by gluten. Just a couple of thoughts to share...since I have made the mistakes. I wish you the best as this kind of rash is very painful and unrelenting.

Share this post


Link to post
Share on other sites

Would you mind sharing the specific reactions(s) you experience?

As of about a year and a half ago, I've started to react to other grains. In these cases, the reactions are tightness in my throat and something on the right side of my neck under the jawbone that swells up.

I'd be very interested in knowing if other people experience similar reactions. Unfortunately all too often, people just post that they "react to other grains" without saying whether it is a typical gluten-type reaction or something else.

Thanks!

I get gluten symptoms when I eat any amount of rice. I get bad lower abdominal pain, mmega-gas, headaches, fatigue, bowel problems but in addition the lymph nodes under my chin swell up and look like a golf ball and i get a dermatitis rash over each side of the jaw over the lymph nodes. My daughter and friend took photos of my jaw dermatitis, so to get a better view I tilted my head back in the photo...As I looked at the pics I noticed my chin and I didn't know what it qwas at first! OMG I was considering plastic surgery until i realized the correlation and what it actually was! It goes away after about a day...and last time it happened when my friend made gluten-free pancakes (with water, organic) with rice flour :-( Miserable! Two pancakes put me in bed for a week at least. And also when I first got put on the elimination diet by my allergist, he told me to begin with rice and chicken LOL! Ummm I found out pretty fast that my body cannot tolerate rice. Rice threw me into serious hypoglycemia! My blood sugar dropped to 50 on a regular basis until I cut out ALL rice & other grains. I don't understand it, but I know rice is NOT my friend :-/

Share this post


Link to post
Share on other sites

Thanksall, for your advice. OMG I took out ALL halides to include iodine, and chlorine & fluoride(use reverse osmosis water) and I cannot have salycilates either! So strange. Xanthan gum puts me in anaphylactic shock and i end up injecting the epi-pen but since I cut out all xanthan gum I have had NO problems with anaphylaxis :-) Halides will trigger DH. I got desparate today and started the Dapsone again :-/ Can't handle this rash. I have done everything recommended for the rash...my dr.initially gave me 3 weeks of amocicillin and it did NOT touch the rash! ONLY Dapsone was clearing it up...after 2 weeks of Dapsone it was almost healed...but WOW expect the worse when you decide to quit Dapsone Oh Em Gee!!! Sooo miserable...10 gaping craters will turn into 50!And they WILL NOT go away. The UV light and red light therapy to help however. Red light therapy is expensive but it helps the healing process.Thank you all soooo much, again. Great to have the support (& offer it to ;-)

Share this post


Link to post
Share on other sites

×
×
  • Create New...