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Anyone Here Sensitive To Fillers Such As Cellulose?


saaa-wheat<3

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saaa-wheat<3 Apprentice

I just recently discovered that the generic thyroid medication that I switched to for about a year was the culprit of my rash (different from DH), hair loss and arrythmia. I suspected that at times when I took some vitamins that the symptoms got worse, so I compared ingredients and what I came up with was cellulose or microcrystalline cellulose (not sure if there is a difference). Once I stopped, these symptoms were relieved. I also recently had a reaction to what I think was the powdered cellulose in packaged shredded cheddar.

I'd be interested to hear if anyone else has experienced similiar reactions and might know more than what I can find on the internet, which is pretty much NOTHING.

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Lisa Mentor
I just recently discovered that the generic thyroid medication that I switched to for about a year was the culprit of my rash (different from DH), hair loss and arrythmia. I suspected that at times when I took some vitamins that the symptoms got worse, so I compared ingredients and what I came up with was cellulose or microcrystalline cellulose (not sure if there is a difference). Once I stopped, these symptoms were relieved. I also recently had a reaction to what I think was the powdered cellulose in packaged shredded cheddar.

I'd be interested to hear if anyone else has experienced similiar reactions and might know more than what I can find on the internet, which is pretty much NOTHING.

I have never reacted to cellulose and it's my understanding that it is not gluten related. It is derived from beta-glucose.

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saaa-wheat<3 Apprentice
I have never reacted to cellulose and it's my understanding that it is not gluten related. It is derived from beta-glucose.

Which is why I posted in this forum as the rash I get isn't gluten-related (Dermatitis Herpetiformis=DH) and wish there were someone out there with more information (though I don't wish this on anyone else!).

I have had to call all the pharmaceutical companies and ask them about this ingredient too. <_<

Thanks for the info that it's a form of beta-glucose. :) At least it's a start...I've not been able to find anything on it.

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  • 2 weeks later...
Brenda K Newbie

I did a quick google search and found that the type of Cellulose used in foods can be referred to as beta-glucose and it can come from wheat.

I stumbled upon this forum when I was searching for Cellulose. I bought new brand of Biotin (subliminal) and everytime I take it I end up with cramps and diarrhea that last for 2 or 3 hours. It is the only ingredient that I see that could be from wheat. Anyways I am buying my old brand Thursday when I get paid.

Below is just one link with info I found. There were several more that came up when I googled Beta-glucose + wheat.

Cellulose (beta-glucose), Important component of the plant cell wall ... Commonly used sources are corn (maize), wheat, potato, rice. Glycogen ...

www.biologyguide.net/bya1/bya1-10-4.htm - 25k -

Which is why I posted in this forum as the rash I get isn't gluten-related (Dermatitis Herpetiformis=DH) and wish there were someone out there with more information (though I don't wish this on anyone else!).

I have had to call all the pharmaceutical companies and ask them about this ingredient too. <_<

Thanks for the info that it's a form of beta-glucose. :) At least it's a start...I've not been able to find anything on it.

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  • 2 months later...
saaa-wheat<3 Apprentice
I did a quick google search and found that the type of Cellulose used in foods can be referred to as beta-glucose and it can come from wheat.

I stumbled upon this forum when I was searching for Cellulose. I bought new brand of Biotin (subliminal) and everytime I take it I end up with cramps and diarrhea that last for 2 or 3 hours. It is the only ingredient that I see that could be from wheat. Anyways I am buying my old brand Thursday when I get paid.

Below is just one link with info I found. There were several more that came up when I googled Beta-glucose + wheat.

Cellulose (beta-glucose), Important component of the plant cell wall ... Commonly used sources are corn (maize), wheat, potato, rice. Glycogen ...

www.biologyguide.net/bya1/bya1-10-4.htm - 25k -

the products which contain cellulose that I used were all confirmed gluten-free, so this is a totally separate allergy...still haven't found much on the subject <_<

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covsooze Enthusiast

Hi Deb :)

I have a similar problem, but I think the ingredient I'm reacting to is magnesium sterate. I'm going to be patch tested in a couple of weeks time. Is this something you could do? It does sound like an allergic reaction that you're having. It is difficult to find stuff on the internet about this.

Susie

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saaa-wheat<3 Apprentice
Hi Deb :)

I have a similar problem, but I think the ingredient I'm reacting to is magnesium sterate. I'm going to be patch tested in a couple of weeks time. Is this something you could do? It does sound like an allergic reaction that you're having. It is difficult to find stuff on the internet about this.

Susie

Hi Susie,

Dermatologist confirmed that this was the culprit due to my switching from brand-name thyroid meds to generic. I remembered that it had gotten worse when I tried new vitamins, and we determined that there was probably a common ingredient which turned out to be cellulose. She confirmed suspicion right at my first appointment by performing a biopsy at the site of one of my rashes because at that point, it had been a year and I was pretty much ready to jump off of a bridge at that point and wanted physical proof if I could get it, rather than mess around some more with my diet to no avail.

Incidentally, she was sensitive to my gluten-free diet (she is pale Irish, just beautiful porcelain skin as a dermatologist should have) and understood that many northern europeans have celiac's and offered up that I could eat oats so long as they were Irish imported (I eat McCann's) because they aren't cc'd over there without my even bringing the subject up other than telling her that I follow a gluten-free diet!

Anyway, I am just putting the cellulose thing out there because it probably took me about a total of 3 years before I learned of all the 'hidden' gluten items (malto*, natural flavoring, etc.) and I was so hoping that someone might be privy to any ingredients which contain cellulose that aren't specifically listed as cellulose on the label. I've also read that it might not be an ingredient that bears requirement for listing on the ingredient panel.

I guess there are different types of cellulose out there, but I don't know if there is a common ingredient (are they all wood based?) that bothers me or if there is one, like say, microcrystalline cellulose that would offend more than just cellulose, or is it the same thing only named different? Stuff like that. I suspect allergy to the common ingredient, as I get the rash when I eat some already grated cheeses...and when I checked the bag, that particular brand used just 'cellulose' to prevent caking. The thyroid meds listed microcrystalline cellulose as well as some of the vitamins, but some of the vitamins only listed cellulose. ALL were confirmed gluten free products, and the rash I experienced was NOT gluten related.

Good luck with your testing. I'd love to hear more on the procedure of your testing for magnesium stearate, what happens with the patch test? It was a suspect ingredient for me until I ruled out that the brand name meds which do not promote the allergic reaction I was taking contained this ingredient, after calling both companies and comparing ingredients. I cannot believe the CRAP they put into generic meds!!! The total listing of ingredients for the generic doubled that of the brand-name, and it was all garbage!

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  • 2 months later...
Michelle B Newbie

I'm so relieved! I just went on my post-Christmas diet, and despite cutting everything good, I continued to put on weight - turns out I'm sensitive to raisins, which I cut out, and the burning sensation in my stomach stopped, and I stopped putting on weight.

However my weight still didn't actually drop, and I continued getting that embaressing gas. Also turns out the diuretics I've been faithfully taking everyday are full of cellulose, which now I discover, can be made from wheat! The tablets weren't labelled gluten-free, but I didn't recognise any of the ingredients as being bad for me, so I took them. I've now thrown them away, just this minute, and hopefully my diet will work. There's nothing more frustrating then being on a very strict GI diet, and not losing a pound. I shal.l now just stick to tablets labelled gluten-free, or without cellulose

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Flo BInks Newbie

I'm so glad to know that I am not the only one who reacts to cellulose, in whatever form. I get the same reactions as I get to gluten, except no D. It turns up everywhere, even in a lot of gluten-free foods. Its a big problem because most medications use it as a filler.

The manufacturers claim it is gluten free; I've even seen it suggested on celiac sites as a "safe" filler.

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Lisa Mentor

Cellulose

From Wikipedia, the free encyclopedia

Jump to: navigation, search

Cellulose, a linear polymer of β-D-glucose linked by β(1→4)-glycosidic bonds.

Three-dimensional structure of cellulose, with four glucose units visibleCellulose is an organic compound with the formula (C6H10O5)n, a polysaccharide consisting of a linear chain of several hundred to over ten thousand linked glucose units.[1][2]

Cellulose is the structural component of the primary cell wall of green plants, many forms of algae and the oomycetes. Some species of bacteria secrete it to form biofilms. Cellulose is the most common organic compound on Earth. About 33 percent of all plant matter is cellulose (the cellulose content of cotton is 90 percent and that of wood is 50 percent).[3]

For industrial use, cellulose is mainly obtained from wood pulp and cotton. It is mainly used to produce cardboard and paper; to a smaller extent it is converted into a wide variety of derivative products such as cellophane and rayon.

Some animals, particularly ruminants and termites, can digest cellulose with the help of symbiotic micro-organisms that live in their guts. Cellulose is not digestible by humans and is often referred to as 'dietary fiber' or 'roughage', acting as a hydrophilic bulking agent for feces.

I think that it's interesting that "Cellulose is not digestible by humans...."

This is also an interesting link regarding binders in meds:

[edit] Binders

Binders hold the ingredients in a tablet together.

Binders ensure that tablets and granules can be formed with required mechanical strength. Binders are usually starches, sugars, cellulose or modified cellulose such as hydroxypropyl cellulose, lactose, or sugar alcohols like xylitol, sorbitol or maltitol.

Binders are classified according to their application:

Solution binders are dissolved in a solvent (for example water or alcohol and used in wet granulation processes. Examples are Gelatin, Cellulose, Cellulose derivatives, Polyvinyl pyrrolidone, Starch, Sucrose and Polyethylene glycol

Dry binders are added to the powder blend, either after a wet granulation step, or as part of a direct powder compression (DC) formula. Examples are Cellulose, Methyl cellulose, Polyvinyl pyrrolidone, Polyethylene glycol

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  • 1 year later...
nora-n Rookie

Yikes. Wikipedia.org deleted microcrystalline cellulose:

http://en.wikipedia.org/wiki/Microcrystalline_cellulose

I think they should not have deleted it.

It is listed lots of places on wikipedia, and yet they deleted it.

Just type in the words and you get two pages of references.

lots and lots of thyroid patients got huge reactiosn, even landing in the ER after Forest chnged Armour Thyroid and the fillers are almost all microcrystalline cellulose.

Check the facebook page Save Natural Thyroid.

Wood pulp is another source for microcrystalline cellulose: http://en.wikipedia.org/wiki/Borregaard

"Plant-derived cellulose is usually contaminated with hemicellulose, lignin, pectin and other substances, while microbial cellulose is quite pure, has a much higher water content, and consists of long chains." sounds like it is not so pure, it can contain lots of substances.

From http://en.wikipedia.org/wiki/Cellulose

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  • 2 weeks later...
Lgood22573 Rookie

WOw- I cannot believe I found this topic. I was searching cellulose!!!! Every single time I eat it, I get immediate bone pain, making me sick. I can't figure out what the heck it is and why it is in everything I eat from cheese to my cold medicine. I'll eat something I think is safe then BAM bone pain and then go read and there it is AGAIN cellulose! I'm so glad you posted that info! I am on synthroid for my thyroid meds I don't know what's in it, I guess I should do some research.

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chatycady Explorer

I too have trouble with all vitamins, medications and cheese. I have been doing research about "tannin" allergy and it seems to fit me. Tannin is a plant phyenol (my spelling is poor) I noted that cellulose is made from plants. I have trouble with fruit juices, (high in tannin) cheese (ananto - tannin) Tea, coffee, wine, grapes, berries, black beans, soybeans, and more. all are high in tannin. Is that the possible connection?

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mysecretcurse Contributor

I'm so glad to know that I am not the only one who reacts to cellulose, in whatever form. I get the same reactions as I get to gluten, except no D. It turns up everywhere, even in a lot of gluten-free foods. Its a big problem because most medications use it as a filler.

The manufacturers claim it is gluten free; I've even seen it suggested on celiac sites as a "safe" filler.

That's the problem with being sensitive to more than just gluten. :( I mean, anything is "safe" unless youre sensitive to it... and you can be sensitive to everything. It's a never ending project for me, trying to figure out all that bothers me.

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  • 3 months later...
heizelman Newbie

That's the problem with being sensitive to more than just gluten. :( I mean, anything is "safe" unless youre sensitive to it... and you can be sensitive to everything. It's a never ending project for me, trying to figure out all that bothers me.

I've found cellulose to be mostly corn based - Microcrystalline Cellulose is in just about every medicine - when you ask the manufacturer they can't prove it doesn't come from corn.

I avoid it at all costs!

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  • 3 months later...
jmb Newbie

I've found cellulose to be mostly corn based - Microcrystalline Cellulose is in just about every medicine - when you ask the manufacturer they can't prove it doesn't come from corn.

I avoid it at all costs!

Although it is possible to manufacture, there is no corn based powdered cellulose produced in North America. It isn't viable from an economic point of view. Most of the powdered cellulose produced is wood based with a smaller percentage from cotton, bamboo or sugarcane residue (bagasse). Microcrystalline cellulose is simply powdered celllulose which has undergone a further acid hydrolysis step to remove the non-crystalline portions of the cellulose chains. This makes the product more dense, flow easier and compress better through the tableting machines used by most pharmaceutical companies.

Regarding an allergy to cellulose I am curious, does the reaction occur when wearing cotton clothes or if a sore/cut is swabbed with a cotton ball (pure cellulose)?

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  • 2 years later...
abelc61 Newbie

I was so pleased to come across this thread as I have been wanting to write about my experiences with cellulose for some time. Cellulose: it sounds so innocuous - like the stuff contained in vegetables.

Based on extensive online research, cellulose, also known as Avicel, microcrystalline cellulose, methyl cellulose, carboxymethyl cellulose, hypromellose, etc., appears to be derived from wood pulp, which is highly chemically treated. So, most of the time, allergic reactions are to the chemicals rather than to the cellulose itself (see footnote 1 below). Cellulose manufacturers claim that chemicals are washed away with copious quantities of water. However, based on my reactions and those of others, it appears that the chemicals are not completely removed.

The most common reactions are: rashes, digestive disorders, hair loss, pain, headaches and heart symptoms. I get a bad headache and non-stop heart palpitations for two days whenever I have the tiniest amount of cellulose. It started years ago with vitamins, then I had a terrible reaction the first time I took compounded levothyroxine prepared with Avicel. The pharmacy explained that Avicel came from methyl cellulose and that it was hypoallergenic - NOT! Once the palpitations subsided, I was grateful to the pharmacy for having used Avicel as it finally explained my reaction to vitamins and supplements which contain cellulose. I check the ingredients of all prepared foods as I recently discovered cellulose in gluten-free bread; I dread the day that I may to have to cook everything from scratch to avoid cellulose!

Lately, I have found only two thyroid medications free of cellulose: Tirosint by Akrimax Pharmaceuticals and Eltroxin by Aspen Triton. Synthroid does not list cellulose as one of its ingredients, but I have my suspicions as I got a rash and bad palpitations when they changed the coating from mat to shiny a few years back. For three years I took 50 mcgs of thyroxine compounded with sodium bicarbonate without any problems; then, in April 2012, 5 mcgs started causing palpitations. I suspect that cellulose has been added to the levothyroxine, but it is not listed in the ingredients. Since Tirosint is not available in Canada, I have been taking Eltroxin. If readers know of any other thyroid medications which are free of cellulose, please feel to post them. I live in constant fear of the formula being changed or the company going out of business. I was off all thyroid medication for months until I discovered the reformulated Eltroxin; it was not a pretty sight!

I would be very interested in hearing from others who have symptoms after ingesting cellulose.

Footnote 1 - Many hypothyroid patients at www.stopthethyroidmadness.com have complained that the cellulose in their thyroid medication impedes the absorption of the levothyroxine.

Edited by abelc61
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  • 1 year later...
Ryan Blank Newbie

i Do, my name is Ryan,

 

I have been on a medicine called Keppra and Tegratal for years now

Each of these medicines contain cellulose

I am slowly taking off the Keppra hoping for the best

i have been dealing wiith this issue for years, I am just glad it is figured out.

I do not know where to go after taking down the Keppra?

I would appreciate any help about what to do next after taking off the Keppra.

My main symtom of the cellulose is not being able to walk or stand correctly and my ringing in the ears has been bothering me for years.

 

 

 

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kareng Grand Master

i Do, my name is Ryan,

 

I have been on a medicine called Keppra and Tegratal for years now

Each of these medicines contain cellulose

I am slowly taking off the Keppra hoping for the best

i have been dealing wiith this issue for years, I am just glad it is figured out.

I do not know where to go after taking down the Keppra?

I would appreciate any help about what to do next after taking off the Keppra.

My main symtom of the cellulose is not being able to walk or stand correctly and my ringing in the ears has been bothering me for years.

I am not familiar with these meds so I don't know if just stopping them is a good idea or not. I hope you are discussing this with your doctor? When you are, maybe you could get a prescription to take to a compounding pharmacy? Maybe they can make these meds for you with out the cellulose you think you are reacting to?

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LauraTX Rising Star

i Do, my name is Ryan,

 

I have been on a medicine called Keppra and Tegratal for years now

Each of these medicines contain cellulose

I am slowly taking off the Keppra hoping for the best

i have been dealing wiith this issue for years, I am just glad it is figured out.

I do not know where to go after taking down the Keppra?

I would appreciate any help about what to do next after taking off the Keppra.

My main symtom of the cellulose is not being able to walk or stand correctly and my ringing in the ears has been bothering me for years.

 

If you are taking Keppra and Tegretol for siezures, or anything else really, it can be very dangerous to wean yourself off of these.  Usually this drug combination is for seizures, which is why I say this.  There are multiple generic manufacturers of both medications at their various strengths, so you may be able to find a manufacturer that makes theirs without the suspect ingredient.  Otherwise, Karen's recommendation of going to a compounding pharmacy is a very good one, and you may be able to get help there.  If you insist on going off Keppra and aren't doing it with the help of a doctor, you may want to put a note in your wallet in case you end up in the ER and you are unconscious so the staff knows how to properly help you.

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  • 2 years later...
Petarevera Newbie

Reaction to cellulose probably has no connection to celiac. It is possible to be allergic to more than one substance. Most cellulose as another person has pointed out is derived from wood pulp; the most common of which is pine because it is the most abundant by product of so much in the wood industry. The allergenic ingredient in pine is colophony which is listed under more than 20 different names (if you are lucky). It is easy to test yourself for colophony allergy - stick a piece of the stretchy pink elastoplast on your inner forearm - if it causes a rash you have likely got a colophony allergy. You can also be patch tested for this.

The best way to avoid cellulose in medications is to get paediatric liquid preparations. For vitamins and supplements buy pure powder forms or liquid. Sometimes you can get veggie caps which do not contain cellulose inside the capsule itself and you just remove the capsule and tip in water or a smoothie. 

Colophony is not easy to avoid because it is hidden in may things - wax on bell peppers and citrus fruits, inks, makeup etc. It is in anything medical that is "sticky" like ECG electrodes, dental impression wax and a million other things. Some people only react to colophony on their skin with dermatitis, other (like myself) react with gut anaphylaxis when it is ingested as well as dermatitis on unbroken skin or angioedema (severe swelling) on broken skin (such as having your eyebrows waxed, which breaks the skin) as these waxes also contain colophony.

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Ennis-TX Grand Master
2 hours ago, Petarevera said:

Reaction to cellulose probably has no connection to celiac. It is possible to be allergic to more than one substance. Most cellulose as another person has pointed out is derived from wood pulp; the most common of which is pine because it is the most abundant by product of so much in the wood industry. The allergenic ingredient in pine is colophony which is listed under more than 20 different names (if you are lucky). It is easy to test yourself for colophony allergy - stick a piece of the stretchy pink elastoplast on your inner forearm - if it causes a rash you have likely got a colophony allergy. You can also be patch tested for this.

The best way to avoid cellulose in medications is to get paediatric liquid preparations. For vitamins and supplements buy pure powder forms or liquid. Sometimes you can get veggie caps which do not contain cellulose inside the capsule itself and you just remove the capsule and tip in water or a smoothie. 

Colophony is not easy to avoid because it is hidden in may things - wax on bell peppers and citrus fruits, inks, makeup etc. It is in anything medical that is "sticky" like ECG electrodes, dental impression wax and a million other things. Some people only react to colophony on their skin with dermatitis, other (like myself) react with gut anaphylaxis when it is ingested as well as dermatitis on unbroken skin or angioedema (severe swelling) on broken skin (such as having your eyebrows waxed, which breaks the skin) as these waxes also contain colophony.

Well this just explained a metric ton of my issues....wax veggies make me puke, condiments with cellulose gel in them make me puke, certain medications make me puke, certain powder mixes do, etc. I never made that connection but yes I do get a itchy rash when they put ECG electrodes on me. Here I thought it was the fact I have a corn allergen and perhaps they were corn derived never thought of the pine thing, might have to have that checked.

Xantham gum has the EXACT same reaction as the cellulose gel/cellulose fiber issue. I puke a few hours after ingesting it with a bunch of mucus like film I thought it was just a inability to digest it.

 

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Victoria1234 Experienced
1 hour ago, Ennis_TX said:

Well this just explained a metric ton of my issues....wax veggies make me puke, condiments with cellulose gel in them make me puke, certain medications make me puke, certain powder mixes do, etc. I never made that connection but yes I do get a itchy rash when they put ECG electrodes on me. Here I thought it was the fact I have a corn allergen and perhaps they were corn derived never thought of the pine thing, might have to have that checked.

Xantham gum has the EXACT same reaction as the cellulose gel/cellulose fiber issue. I puke a few hours after ingesting it with a bunch of mucus like film I thought it was just a inability to digest it.

 

Omg ennis! How enlightening! 

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  • 4 months later...
Lucylou2013 Newbie

I am presently having multiple allergy reactions and had Thyroid script compounded to remove corn deritaves only to find I reacted for 4 days with top to toe chronic pain and stiffness, no sleep, a tailbone that was soooo painful I could hardly sit on and chronic restless irritable legs, body and mind, as I did when corn was in it. (I also react to gluten with the same symptoms but with 3 to 4 more days of diarrhea to follow). My Compound Chemist suspected I was reacting to microcrystalline cellulose and has now redone my Thyroid script again replacing it with rice. So far so good, no reaction as yet. I take 5 scripts and both corn and Microcrystaline cellulose are in them all. Its going to be an extremely expensive  ongoing exercise from now on. No PBS meds now, Pensioner or not.

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Awol cast iron stomach Experienced
3 hours ago, Lucylou2013 said:

I am presently having multiple allergy reactions and had Thyroid script compounded to remove corn deritaves only to find I reacted for 4 days with top to toe chronic pain and stiffness, no sleep, a tailbone that was soooo painful I could hardly sit on and chronic restless irritable legs, body and mind, as I did when corn was in it. (I also react to gluten with the same symptoms but with 3 to 4 more days of diarrhea to follow). My Compound Chemist suspected I was reacting to microcrystalline cellulose and has now redone my Thyroid script again replacing it with rice. So far so good, no reaction as yet. I take 5 scripts and both corn and Microcrystaline cellulose are in them all. Its going to be an extremely expensive  ongoing exercise from now on. No PBS meds now, Pensioner or not.

Hi Lucy Lou,

I am very glad you were able to get your med compounded and figured out corn derivative compounds are causing you reactions. After my gluten challenge and the fall out that followed I determined I could not have corn derivatives microcrystalline cellulose, maltodextrin (corn), citric acid (corn derived) as well. My joints, gi, and then some react. I had to even remove White distilled vinegar derived from corn from my home as well. So even when something was gluten-free I often had to call to verify it was corn free , make my own, or go  without ex condiments, medicines, vitamins, etc. 

I am glad you figured it out.

Best wishes on healing.  

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      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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