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Modified Food Starch - Correction Of Misconception


RKB-MD

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tarnalberry Community Regular
And don't forget that the current definition of "gluten-free" that they are looking at is not 100% gluten free. It's mostly gluten-free. Which will actually make it harder to be truly gluten-free, not easier.

Guys, come on. It's been explained before, and I'll explain it again. And no amount of wishful thinking will make it go away.

In a packaged product, there will *never* be anything but a lower limit for a definition of the term gluten free; that term will never truely mean zero.

Why? Because to enforce the rule, you have to be able to measure compliance. To measure compliance you have to use instruments. Instruments do not have perfect precision. They may be completely accurate (always return the same results), but will never be perfectly precise (no error) and there will always be something smaller that they can't test. Combine that with making it 'reasonable' to test for - cost and time, both - and it will never be 0ppm, or 0ppb, or 0ppt.

Think about it. ...

You have an instrument that could test for 0ppm (million). Well, that still might not actually be 0 gluten, because it could have 499ppb (billion) of gluten. But there's no instrument that can detect that little gluten. Do we not have a rule or any testing at all? Or maybe in 20 years there is one, but it's 100 times the cost, making all food labeled gluten free an order of magnitude more expensive (that $5 loaf of bread is now $40) - that just won't fly.

What if that instrument comes down in price, and you can measure 0ppb now for a reasonable price. Well, that still might not actually be 0 gluten, because it could have 499ppt (trillion) of gluten. But now there's no instrument that can detect *that little* gluten. Still no rule for testing? Maybe in another 20 years there will be one, or maybe there won't be. Maybe it'll be prohibitively expensive again.

Engineering and compliance monitoring is the limiting factor here on why we will never have "true-0" limits.


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corinne Apprentice

Tarnalberry - thanks for your comments. I teach analytical chemistry and I have sophomore chemistry students come to me and say there is no X in their sample. There could be X in their sample, but the amount may be below what we can detect with our method. Even a lot of college chemistry students don't seem to grasp this concept.

There is no such thing as 100% gluten free unless you check every single molecule in a sample and that can't be done anywhere by any method and then you can only say that particular sample was gluten free. Instead, the companies report that the amount of gluten is less than the amount the method can detect. We have to decide if that amount is harmful.

Of course, there is the other issue of enforcement of regulations and that is a personal judgement call about the companies.

RKB-MD Rookie

In addition to the excellent comments that have been posted, the key thing that people seem to be missing is that while the FDA states that starch, in foods, is usually corn - IT MAY NOT BE CORN! It may be a giladin containing substance that will make any celiac sick. It is the statement that I have read in several threads that had a very nonchalant attitude about MFS that raised my ire.

Would any of us knowingly eat Kikoman's soy sauce on crab rangoon and wash it down with a Sam Adams? NO!

The wheat brewed beer and the crab rangoon are obvious, the Kikoman's because we have learned that it is not pure soy sauce and it is brewed over wheat.

Therefore, why assume that MFS is "safe" when it may not be unless it is completely defined. Defined the way some of the "good guys" like Kraft brand specify the content.

As a physician (yes that's what the MD in the sign-on name is all about), I would never tell a patient to smoke cigarettes, drink excessively, or throw caution to the wind when it comes to non-adherence to an appropriate diet.

blueeyedmanda Community Regular

I did not learn the soy sauce was gluten free on here, it says wheat right on the bottle.

blueeyedmanda Community Regular

very nicely put momma goose

Guest j_mommy

I just want to say.....as a new person here the "senior" posters have been great!!!!

In my experience they have always said what they believed and have ALWAYS ended the post with "always do you're own investigating and call the manufactor!"

I think everyone kind of understands this is just like any other buyer beware situation...you always need to do your own checking.(unless a poster shares the email ect) most people back up anything with fact!!!!!

darlindeb25 Collaborator

You stormed onto this site like a bull in a china shop.I disagree. I do not feel he stormed in here at all, he just stated a simple fact that some of us do not want to hear. I totally agree with him and I have been stating that for some time. We can't trust our govt to protect us from gluten. It will never happen. DKB just gave us a strong reminder of that fact.


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mandasmom Rookie
RKB MD

You stormed onto this site like a bull in a china shop. A more gentile approach would have been more received.... as in bedside manner.

It is obvious that you have information to share. Share it well and deliver it well. Just my thoughts.

I know I sound like a broken record---but risk is implied in all that we do--inlcuding the food we eat. Each of is repsonsible for assuming as much risk as we feel comfortable with. I , for one, am willing to take a chance now and then with foods that I beleive to be safe. I never ever throw caution to the wind, but I do eat out several times a week and often eat at freiends homes. I am willing to take those chances in return for a fuller life..not the right attitude for everyone but the right one for me!!

tarnalberry Community Regular
...

It is the statement that I have read in several threads that had a very nonchalant attitude about MFS that raised my ire.

Would any of us knowingly eat Kikoman's soy sauce on crab rangoon and wash it down with a Sam Adams? NO!

The wheat brewed beer and the crab rangoon are obvious, the Kikoman's because we have learned that it is not pure soy sauce and it is brewed over wheat.

...

What you read as a nonchalant attitude may be someone carefully picking their battles. You can fight every last thing in life - and leave yourself drained and frustrated wondering why life is always a challenging battle. Or you can make informed decisions on your battles - such as knowing what companies will identify the source of their MFS, knowing what countries are less likely to use wheat for MFS, and what foods are less likely to use wheat for MFS - when you need to have that battle at all.

As for your two examples - neither of those reference MFS. The first clearly lists wheat on the label (it doesn't use MFS at all), and the second specifically notes barley in the manufacturing process as well.

I do fundamentally agree with you - we cannot assume that just because most MFS is from corn means all of it is. But we do have to educate ourselves into such a position that we can make informed decisions and pick our battles wisely. In many cases, the choice would rightly be to avoid the battle (and hence the food) but that's not necessarily true in *every* case imaginable.

RKB-MD Rookie

Try again Ms Goose Moderator.

If you recall I did not storm onto this forum - I opened, many moons ago with the "Celiac Sprue and Doctor too" thread - or did you already forget that?

I do wish to thank those who have expressed understanding and support for my position. A gluten free lifestyle is hard enough without taking chances where those risks are not needed.

My comments were not heavy handed - they were in reaction to someone on your forum who claims to be an expert who was repeatedly advocating throwing caution to the wind when it came to MFS based on an FDA statement that most "starch" is "likely to be corn" - an assertion that has been, and through much clinical evidence, proven otherwise.

How dare you accuse me of not having a bedside manner - you do not know my clinical practice, nor would you. Shall I make comments in a public forum denegrating how you have raised your children without any knowledge along those lines?

If you look at your general membership, you will see that there are people who are "allergic" to non-antigentic items who are not being given any help in determining what is wrong with them. Do you think, on top of those extremely unhappy and ill people you need to be misinforming the newbies who may have finally had their medical conditions figured out by the average moron MD who is given all of 3-6 min to see and treat every patient or who have most likely been seen by a nurse, not a physician?

No wonder I was "warned" by several different physicians to avoid this forum and "get out while I still had a chance". (Would you like me to forward the private emails I received from them to prove this?) In addition to that, my original pediatric gastroenterologist, back in 1994, when he excitedly ran to see his former patient who was a resident in his hospital, warned me to "avoid the Sprue group in xxx city" as "they pretty much are a bunch of nuts". Yet I stuck around on this forum, learning where I could, contributing as I could as well.

The problem with this disease is that it has so much misinformation involved, so much ignorant medical care, and so many "hangers on" who do not have the disease.

Go ahead - shun yet another doctor, especially one who suffers along with you, battles the same problematic, ignorant waiters, chefs, food coorporations along with you, and deals with the same issues on a day to day basis.

Good work with the attitude and comments Ms Goose. Maybe this Forum needs a different Moderator.

Oh wait - let me post my "signature":

Diagnosed 1970 almost at the point of death at the 2nd percentile for height and weight.

My blood sample is the "Reference Standard" on record for the HLA typing bank at the University of Missouri for Celiac Non-tropical Sprue. (For those who do not know, this is the International Standard Bank for HLA typing.)

IGA positive for giladin reactivity.

Gluten-free lifestyle and HEALTHY!!!

VegasCeliacBuckeye Collaborator
"Modified food starch" is, in fact, usually corn. This is why you need to ask about it, if the manufacturer is not one with a gluten disclosure policy (such as Kraft has). If you automatically reject all foods with modified food starch as an ingredient you are rejecting many, many more safe foods than ones with wheat. If in doubt, ask.

Exactly my original point PSAWYER!

However, Dr. Guns a Blazing apparently thought Iwas telling a newbie to eat everything that ha s MFS because its all 100% corn based and thus gluten free - which is, of course, absurd...

I merely said that most MFS is corn based, which is 100% accurate in the USA.

Hopefully, this will not incite another argument on the definition of "most".

debmidge Rising Star

I'd like to take this moment to point out that the price of corn is skyrocketing and that although many companies would not want to cross the MFS line using wheat (which will be less expensive than corn) instead of corn, there's always the possibility that they could change to wheat suddenly without updating their label and without updating the info that the Cust. Service Reps use to answer our gluten-free questions. There's also those who would be unscrupulous enough to hide that info so they won't have to manufacture a new label....and then would pay the fine when the FDA orders the recall. A fine would probably be cheaper than the cost to use corn AND change the labels.

At that point, yes, they are in violation of the law but when & how could we tell? Gee I'm not paranoid! :unsure:

debmidge Rising Star
I recently read a quote from another member:

"Most modified food starch is corn based and ok. If the food starch has wheat in it, it will say so on the label per 2006 food allergen laws"

WRONG!!!!!!!!!

Modified food starch is still a major issue for people who are gluten enteropaths.

This is an ill defined dietary supplement that does NOT require specific definition as to the source. Federal guidlines have NOT been enforced, nor, as written are they enforcable.

The laws set out in 2006 are "suggestions" only, not requirements. Fortunately with our litigenous society, many companies are complying. The specific requirements are NOT enforcable on a Federal level.

Unless otherwise specified (as they are "encouraged" to be) anyone with gluten enteropathy should avoid all ill defined "modified food starches" and should contact the manufacturer to explain, and should demand that that manufacturer specify in writing what EXACTLY the food starch is.

The following are currently FDA acceptable food starch additives: casein, wheat, barley, corn, soybean, millet. Notice 50% of these are not on a gluten free diet. And, most importantly, some of the gluten containing items allow the company to state "Wheat free" without being truely GLUTEN free.

I happen to agree with this statement and I will definitely speak to people I know who are in pharamaceutical industry and who work for the FDA in the capacity of inspector and I will make an attempt to try to find out more information.

Remember, an ounce of prevention is worth a pound of cure and that should be our mantra as regards this subject.

darlindeb25 Collaborator

RKB's voice on this forum is just as important as anyone else's. His opinion is just as important as momma goose's. I totally agree with RKB and always have. Lovegov has the same opinion as you momma goose and that's fine, it's your opinions. RKB refuses to fall prey to these companies who always state, "We will always state the origin of the products we use!" I do not trust Kraft anymore than I trust anyone else. These companies change ingredients at the drop of a hat.

As I have stated over and over, this new law is only as good as the policing of it and I guarantee, it is not being properly watched over. Just as was already stated, it is cheaper to pay a fine than to change everything. A $500 fine is nothing to a multi million dollar company! And no, I do not know for a fact that the fine is $500. Just as none of you know for a fact that the new law is being enforced.

None of us are safe just because a company says we can trust them. The old saying goes, "Hurt me once, shame on you, hurt me twice, shame on me!" Famous last words are, "Trust me!", and how many of us have been hurt by that term before.

It upsets me so much in this forum when newbies are given info that is not necessarily good info. They think the moderators are God and would never give them bad info. Mods are just people like the rest of us. You do not need any special qualifications to be a moderator and quite often, it shows. Too many mods are overbearing and feel their advice is the only advice. I'm sorry that I am stepping on toes here, but sometimes your toes need stepped on to get your attention. Momma goose, you have your opinion and RKB has his, his is just as important as yours, just as yours is as important as his. Opinions are opinions.

Fiddle-Faddle Community Regular
RKB MD

You stormed onto this site like a bull in a china shop. A more gentile approach would have been more received.... as in bedside manner.

It is obvious that you have information to share. Share it well and deliver it well. Just my thoughts.

Um, it seems to me that all he did was post an opinion contrary to yours. I don't see that as a good excuse to make the comparison to a bull in a china shop, nor to make a snide cut at his profession.

And the word "gentile" means "non-Jewish." I assume you simply don't know how to spell "gentle;" otherwise, it looks like you are making a religious statement.

ravenwoodglass Mentor

First off I hope RKB will continue to post. He is a knowledgeable person who could actually help a bit in getting other doctors more knowledgeable and I pray that the nasty responses that he has gotten from a few of the folks here do not scare him away again for months.

One thing that has not been mentioned in this issue is this-

We are now a global society, the food we eat and the components of them are not always made in the US. We also import a great deal of food. Corn right now may be the most common form of MFS in the UNITED STATES, however in Europe and many other countries the most common starch to use for MFS is Wheat. In addition they consider this MWS to be gluten free, we don't. Many companies source out of country for the stuff it uses, and if you think they don't then certainly the pet food fiasco proves that, (and who actually thinks the melamine in the rice and wheat gluten didn't make it into human food?).

RKB was trying to bring some intelligent info that is very needed. It is a shame that someone who is trying to give info gets so much antagonism from a few others. It is really sad that many are so prejudiced against the medical community that anything they say has to be challenged in this way. People are entitled to give their opinions. And I for one value everyones opinion, if it does not agree with mine I might say so, (and do often on alcohol, too often in many's opinions most likely) but I don't attack.

darlindeb25 Collaborator

(and who actually thinks the melamine in the rice and wheat gluten didn't make it into human food?).This is very scary to me and the first thing I said when it all started was, "How can we be sure this isn't in the general public's food?" I live in an area with so many different nationalities represented. Some of the foods on the grocery shelves are things I have never heard of before and many are from other countries. It is scary!

ravenwoodglass Mentor

"It upsets me so much in this forum when newbies are given info that is not necessarily good info. They think the moderators are God and would never give them bad info. Mods are just people like the rest of us. You do not need any special qualifications to be a moderator and quite often, it shows. Too many mods are overbearing and feel their advice is the only advice."

This is one thing I agree about totally. It only bothers me though when that info may be pertinent to them but not to others. Many forget that celiac is a disease that little is still known about. The person speaking may not have a problem with certain things but their presentation may be different from mine. Blanket statements about the safely of certain things and the idea that since whatever it is does not present a problem for them it is safe for all are dangerous and can be quite confusing to someone who is new to the gluten free world. For folks who are trying to puzzle things out through elimination it can make that task almost impossible.

darlindeb25 Collaborator

Many forget that celiac is a disease that little is still known about. The person speaking may not have a problem with certain things but their presentation may be different from mine. This is so very true. Just the fact that so many feel you must have certain genes to be celiac, that you can't become celiac otherwise. I do not think we know enough yet to be placing judgment. They know the genes make it probable, yet they do not know much else, as of yet. Celiac disease has exploded in the press, yet it still is very young in it's research.

debmidge Rising Star
We are now a global society, the food we eat and the components of them are not always made in the US. We also import a great deal of food. Corn right now may be the most common form of MFS in the UNITED STATES, however in Europe and many other countries the most common starch to use for MFS is Wheat. In addition they consider this MWS to be gluten free, we don't. Many companies source out of country for the stuff it uses, and if you think they don't then certainly the pet food fiasco proves that, (and who actually thinks the melamine in the rice and wheat gluten didn't make it into human food?).

You hit a nerve on this one: the importation of even minor ingredients can be a nightmare to regulate. The container could indicate tapocia starch but what if it was processed in a wheat-laden facility in some 3rd world nation? Now I know this isn't quite the FDA topic we started on but the policing of companies would then multiply and who's to know if the FDA can even get to so many.

I happen to live in area inhabited by a lot of people who observe strict Kosher law. It is against the law to label something as Kosher when it is in fact not. The New York newspapers often run stories about stores that were selling something as Kosher when it was not and the store or manufacturer gets fined. That's a drop in the bucket. What about the times that that store or manufacturer wasn't caught? I'm sure it happens. Who's to know or tell? The Rabbis probably know who did nor did not get proper certification so the culprit gets caught that much quicker. But how can an agency (FDA) find everything out all the time when there are so many sources involved. And again, a fine is small compared to the profit they can make until they are found out.

Additionally, I find it unconscionable that a manufacturer not know what is in his product, even if he sub-contracts the minor ingredients.....I have heard that on phone when asking if something is gluten-free.

Guest KG in FL
You hit a nerve on this one: the importation of even minor ingredients can be a nightmare to regulate. The container could indicate tapocia starch but what if it was processed in a wheat-laden facility in some 3rd world nation? Now I know this isn't quite the FDA topic we started on but the policing of companies would then multiply and who's to know if the FDA can even get to so many.

I happen to live in area inhabited by a lot of people who observe strict Kosher law. It is against the law to label something as Kosher when it is in fact not. The New York newspapers often run stories about stores that were selling something as Kosher when it was not and the store or manufacturer gets fined. That's a drop in the bucket. What about the times that that store or manufacturer wasn't caught? I'm sure it happens. Who's to know or tell? The Rabbis probably know who did nor did not get proper certification so the culprit gets caught that much quicker. But how can an agency (FDA) find everything out all the time when there are so many sources involved. And again, a fine is small compared to the profit they can make until they are found out.

Additionally, I find it unconscionable that a manufacturer not know what is in his product, even if he sub-contracts the minor ingredients.....I have heard that on phone when asking if something is gluten-free.

Actually, from what I interpret from this thread, it is the topic started. Or at least what I get when leaving out the sniping. Does this whole thread boil down to the fact that we are never 100% sure of every single ingredient in our foods no matter what the label says? I think I can agree with that. There are plenty of examples out there of this happening on occasion.

Now the dogs in stores part I think I read too fast, I don't know what that pertains to. Nasty hygine in stores? Lack of following rules? Both true sometimes I think.

Isn't this the whole issue - or am I missing something?

And I hope the MD is not offended away. And my personal MD is no help to me at all, but that doesn't mean all MD's are worthless! haha I don't even think he came on too strong here. After reading some of the other threads comments that are "allowed" by the moderators, the MD was mild!! It appears some posters are "allowed" to voice strong opinion, with no one raising an eyebrow, and others are slammed for it.

Oh, and I knew what MommaG meant when she wrote "gentile"... Not the ethnic word. She meant the different pronunciation of gentle. I don't think anyone would be offended by that. How do you spell that one? The same? or Gentele? It could be gentile? No... Now I have to look up something else!!

I think all the information shared is so valuable though, it's worth sifting through.

hathor Contributor
In addition, the weak enforcement of the regulation allows for statements on labels in the "Contains" portion that are not, when the actual ingredient list is read, consistent. I personally have read labels that did not have "Wheat" in the Contains line, yet the ingredient list included wheat.

I have no information on the modified food starch issue being debated. However, this statement jumped out at me since I have read the law. The law requires the allergens to be disclosed in either the ingredients list or a "contains" statement. If the ingredients list includes wheat, the law does not require a contains statement showing wheat. So labels like this do not prove "weak enforcement" of the law (which is a statute, not a regulation). Not to say, of course, that there isn't actually weak enforcement <_<

The statute, in pertinent part and with my emphasis:

SEC. 203. FOOD LABELING; REQUIREMENT OF INFORMATION REGARDING ALLERGENIC SUBSTANCES.

(a) In General.--Section 403 of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 343) is amended by adding at the end the following:

``(w)

(1) If it is not a raw agricultural commodity and it is, or it contains an ingredient that bears or contains, a major food allergen, unless either--

``(A) the word `Contains', followed by the name of the food source from which the major food allergen is derived, is printed immediately after or is adjacent to the list of ingredients (in a type size no smaller than the type size used in the list of ingredients) required under subsections (g) and (i); or

``(B ) the common or usual name of the major food allergen in the list of ingredients required under subsections (g) and (i) is followed in parentheses by the name of the food source from which the major food allergen is derived, except that the name of the food source is not required when--

``(i) the common or usual name of the ingredient uses the name of the food source from which the major food allergen is derived; or

``(ii) the name of the food source from which the major food allergen is derived appears elsewhere in the ingredient list, unless the name of the food source that appears elsewhere in the ingredient list appears as part of the name of a food ingredient that is not a major food allergen under section 201(qq)(2)(A) or (B ).

My reading of the law, i.e., "or" means "or," is the same as that of the FDA:

FALCPA requires food manufacturers to label food products that contain an ingredient that is or contains protein from a major food allergen in one of two ways.

The first option for food manufacturers is to include the name of the food source in parenthesis following the common or usual name of the major food allergen in the list of ingredients in instances when the name of the food source of the major allergen does not appear elsewhere in the ingredient statement. For example:

Ingredients: Enriched flour (wheat flour, malted barley, niacin, reduced iron, thiamin mononitrate, riboflavin, folic acid), sugar, partially hydrogenated soybean oil, and/or cottonseed oil, high fructose corn syrup, whey (milk), eggs, vanilla, natural and artificial flavoring) salt, leavening (sodium acid pyrophosphate, monocalcium phosphate), lecithin (soy), mono-and diglycerides (emulsifier)

The second option is to place the word "Contains" followed by the name of the food source from which the major food allergen is derived, immediately after or adjacent to the list of ingredients, in type size that is no smaller than the type size used for the list of ingredients. For example:

Contains Wheat, Milk, Egg, and Soy

Open Original Shared Link

I'm not trying to be pendantic here. I thought it was important to stress that folks should not rely simply on the absence of allergens disclosed on a "contains" statement. You need to read the ingredients list, also!

hathor Contributor
Oh, and I knew what MommaG meant when she wrote "gentile"... Not the ethnic word. She meant the different pronunciation of gentle. I don't think anyone would be offended by that. How do you spell that one? The same? or Gentele? It could be gentile? No... Now I have to look up something else!!

I'll spare you that task. The word is "genteel."

Lisa Mentor
I'll spare you that task. The word is "genteel."

As a self-pronounced terrible speller... it is now corrected.

darlindeb25 Collaborator

Now the dogs in stores part I think I read too fast, I don't know what that pertains to. Nasty hygine in stores? Lack of following rules? Both true sometimes I think.KG in FL--this was simply an example of how lax the policing is of these FDA rules. A law is only as good as those who are making sure the law is truly in effect.

If the FDA will continue to allow a store to sell spoiled dairy products to the general public and advice people to not buy their dairy products at said store, then what makes you think they are making sure the companies are following the rules for the allergen law? The dairy problem pertains to almost everybody and the allergen law is for a much smaller group of that same public.

I definitely feel we should not be telling others, especially newbies, it is ok to use certain products, just because there is a law on the books. We should always call and ask and then use our own judgment on the answer we received.

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    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
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