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Refined Sugar


sburton

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sburton Newbie

I've had intestinal reactions over the past couple of years even though I am VERY careful about my gluten-free diet. (note: it's been 9 years since I'm on a gluten-free diet) After some experimentation over about a year, I talked with my Gastroenterologist last year, informing him that I suspect that it is sugar that is causing me difficulty, but he assured me that sugars are about the easiest thing for our bodies to digest and absorb. He told me that it is likely something that is in the food that also contains the sugar.

After another year of more thorough experimentation, I am VERY convinced that it is processed sugar that causes me difficulty. NOT fruits, NOT lactose, NOT artificial sweeteners, but refined sugars. Everything seems to point to this.

I've booked another appointment with my Gastroenterologist and am hoping he'll help me in figuring this out.

In the mean time, I've been on a STRICT sugar-free diet for the last 2 weeks. I am pleased to say that I feel better now than ever and have had zero intestinal issues.

I also realize that cutting sugar out of my diet has it's own additional positive health effects. Like people have said to me: if you had to cut something out of your diet, sugar is a good one to go. It's still a challenge. And I still want to know for sure that sugar is the culprit.

Has anyone else with Celiac have sensitivity to processed sugars only (NOT including lactose or fruit)? Or heard of this?

Thank you so much.


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erinecox Contributor

I'd say maybe do a little investigation into candida overgrowth... if you are having intestinal discomfort it could be due to fermentation of unprocessed sugars. Candida and gluten intolerance have alot of common symptoms and I believe personally go hand in hand. Just google candida overgrowth (if you haven't already) and you'll find a ton of info about symptoms. Your GI will have little interest in this and will never agree that you have it (or it's very unlikely). You could see an alternative practitioner for some help as well.

HTH!

Lori2 Contributor

It

T.H. Community Regular

*raises hand*

I am allergic to sugar cane. I kept a food journal before I was able to see a doctor about it, and sugarcane was one of the first things that had an obvious connection to my symptoms. It was later confirmed with an allergy test. I was also told, years and years ago when I mentioned the possibility because I'd noticed I don't always feel to great after a lot of sugar, that it was impossible to react to sugar.

:rolleyes:

I don't get hives, but tend to get headaches or this kind of spacy feeling. Often flu-like symptoms, stomach issues if I eat too much, and a MASSIVE craving for the stuff. Sore throat now happens, since I've been off of it for a while.

I don't have yeast issues, or problems with other sweeteners (other than gluten cc problems) or with fructose/fruit. It's just the sugarcane.

If you are wondering if your reaction is an allergy specifically, there's actually a pretty good way to check. Fully processed sugar has most of the sugar protein eliminated. There's usually less than 5ppm of sugar proteins left, from what I've read. Typically more like 1-2 ppm, really.

The sugar used in most of the gluten-free foods is less processed. If you look, it's usually evaporated cane juice. This has a lot more of the allergen present. If I remember right, you can find evaporated cane juice for sale at health food stores or places like Whole Foods. If you stay off sugar for a while and then try this, and then stay off for a while and try fully processed sugar like C&H or Dominos sugar (in the States), you can see how you react.

A stronger reaction to the less processed sugar would likely indicate an allergy. :)

sburton Newbie

Thanks everyone.

What is the difference between a sugar allergy and a sugar intolerance? The reason I ask is to try to figure out who to visit next (ex. my allergist that I already have for my air-borne allergies). Could an allergy be missed - or not considered - by a Gastroenterologist? I realize that a specialist in one area may not think of potential causes outside of his/her expertise. It's good to at least know of potential questions to ask at my upcoming appointment.

Lori2 Contributor

This is my understanding of the difference. I probably shouldn

sburton Newbie

Both allergies and intolerance could produce similar outward symptoms? I don't get any skin reactions. I should mention that I was tested negative for signs of diabetes on a recent physical (didn't bother talking with my general doctor on this at the time as I wanted to speak with the specialist first).


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Skylark Collaborator

The main issue with sugar is fructose malabsorption, but if you don't react to fruit at all that isn't the problem.

Lori2 - I have the same understanding. Allergies produce classic symptoms very rapidly. Itching, swelling, hives, edema, rhinitis, and other symptoms related to histamine release from mast cell degranulation. They're triggered by IgE. Allergies also usually respond very nicely to antihistamines.

Intolerances don't tend to respond to antihistamines and I don't think the mechanism is as well understood. Symptoms can be broad, and they can take longer to appear than allergies.

I'm fascinated by the possibility of cane sugar sensitivity. I can't tolerate refined sugar well at all but I had always thought it was some sort of carb reaction. It had never occurred to me that it could be a reaction to sugar cane. Off to try baking with some beet sugar!

Juliebove Rising Star

I have IgG allergies. A naturopath can check for those with a blood test. An allergist would normally be the one to check for IgE allergies. Those are the ones that can kill you. Sometimes other Drs. can do this test. It is either by a skin prick or a blood test.

But then there are those things that don't fall into either category. For me that is garlic. I can tolerate a very small amount. But not a lot. It doubles me over with stomach pains. So I just don't eat it.

Sarah Alli Apprentice

This is my understanding of the difference. I probably shouldn

Skylark Collaborator

Non-celiac gluten intolerance is looking to be a reaction mediated by innate immunity, not humoral immunity. Antibodies aren't even involved. Gluten peptide directly causes mucosal inflammation in some people.

This is the problem with the catch-all words "intolerance" or "sensitivity". They don't mean much and change from food to food and person to person.

T.H. Community Regular

Both allergies and intolerance could produce similar outward symptoms? I don't get any skin reactions.

According to my allergist, probably, but not always. Intolerances that involve the lack of certain enzymes, like the lactase mentioned above, are better understood. But enzymes aren't the only way we break down food, so sometimes the lack of other things are what cause the problem, certain substances in our bodies.

And some intolerances are simply named that because we don't have another name for it. Essentially, a person eats something and feels terrible, and doctors don't know why, or what is going on. Not a clue. Before IgE tests were invented, these were called allergies, because anything that the body reacted to incorrectly was called an allergy. Since the discover of IgE, everything that ISN'T IgE mediated was dropped from the allergists' purvue. This is changing slowly, because they are starting to realize that there is more going on than just IgE in some cases.

However, for typical IgE allergies, my allergist says there are two different ways the body reacts. One is the traditional hives on the skin type of reaction. This tends to involve the whole body, breathing can be compromised, anaphylaxis can occur in the worst cases. Another is the gastro-intestinal system reacting to the allergen. This one CAN result in hives, but rarely does. It also rarely gets a positive on the skin test, because the skin isn't reacting to it, your insides are. So in this case, the inflammation and other nastiness is going on INSIDE your body, but not so visibly outside of it.

If you ever get a true hive-ridden allergic reaction, you tend to feel beat down, achy, exhausted, horrid. Sometimes get headaches and such. I tend to get this with a few medications.

My sugarcane allergy is just like that, but without the hives, and with some gastro issues instead (the runs, that sort of thing). I have met many people who don't even get enough of the gastro issues to notice, but get congestion, aches and pains, etc...

This is one of the reasons that these often don't get diagnosed, because they are only really recently starting to be acknowledged by a lot of allergists. The hives reaction is much more the type we think about when we think of allergies, you know?

domesticactivist Collaborator

Both the Specific Carbohydrate Diet and the GAPS diet have a lot to say about this! (For more info, go to the blog linked from my profile and search on GAPS Resources).

Really quickly, monosaccharide sugars are easily digested, while disaccharide and polysaccharide sugars are not. They are physically different from each other on the molecular level and need different processing in the gut. Table sugar is sucrose, which is a disaccharide sugar and so not as readily digested, especially by a gut that has already sustained damage. This is why on the GAPS and SCD diets, many fruits and honey are allowed (after a slow introduction period), but table sugar and starchy vegetables are not.

Here is the SCD Legal Foods list. GAPS is more restrictive and doesn't allow the processed crap that is in some cases allowed with the SCD, but this should give you an idea.

Open Original Shared Link

jenngolightly Contributor

Thanks everyone.

What is the difference between a sugar allergy and a sugar intolerance? The reason I ask is to try to figure out who to visit next (ex. my allergist that I already have for my air-borne allergies). Could an allergy be missed - or not considered - by a Gastroenterologist? I realize that a specialist in one area may not think of potential causes outside of his/her expertise. It's good to at least know of potential questions to ask at my upcoming appointment.

My food allergy was missed by my gastro and immunologist. It took my elimination diet (Specific Carb Diet) and a dermatologist to figure out that I was allergic to tree nuts.

Originally, I was having problems getting better on a gluten-free diet. My gastro sent me to an immunologist who did allergy testing via prick tests and blood tests, but I had weird results when I didn't react to any of the pricks, including the histamine "control." It has something to do with antibody deficiency... so I still don't know everything that I'm allergic to (if any). But those pricks only tell you what you're allergic to, not intolerant or sensitive to.

Through the diet I was able to see that when I added nuts into my diet I broke out into hives, eczema, rhinitus, throat swelling, and other "allergy" symptoms. I went to the dermatologist for meds to control the eczema, and he helped me tie together the symptoms to the food trigger. When I added corn, I developed gastro issues, brain fog, lethargy, neuro issues, among others. For me - nuts is an allergy, and corn is an intolerance.

Good luck!

chasbari Apprentice

I've had intestinal reactions over the past couple of years even though I am VERY careful about my gluten-free diet. (note: it's been 9 years since I'm on a gluten-free diet) After some experimentation over about a year, I talked with my Gastroenterologist last year, informing him that I suspect that it is sugar that is causing me difficulty, but he assured me that sugars are about the easiest thing for our bodies to digest and absorb. He told me that it is likely something that is in the food that also contains the sugar.

After another year of more thorough experimentation, I am VERY convinced that it is processed sugar that causes me difficulty. NOT fruits, NOT lactose, NOT artificial sweeteners, but refined sugars. Everything seems to point to this.

I've booked another appointment with my Gastroenterologist and am hoping he'll help me in figuring this out.

In the mean time, I've been on a STRICT sugar-free diet for the last 2 weeks. I am pleased to say that I feel better now than ever and have had zero intestinal issues.

I also realize that cutting sugar out of my diet has it's own additional positive health effects. Like people have said to me: if you had to cut something out of your diet, sugar is a good one to go. It's still a challenge. And I still want to know for sure that sugar is the culprit.

Has anyone else with Celiac have sensitivity to processed sugars only (NOT including lactose or fruit)? Or heard of this?

Thank you so much.

It's even more likely to trigger my secondary RA flares.. even more so than nightshades. I avoid it at all costs now. I think there are SIBO implications as well. I would trust your gut on this one. I think you have it figured out.

  • 3 years later...
mfoytek Newbie

In response to you post., I've had a problem with refined sugar all of my life where I break out with large pus irruptions all over my body. Mostly now in my later years (now 59) on my face and scalp. Everything these days have refined sugar in it so it is a real challenge to fined foods that doesn't have any refined sugar in it. I did go to a doctor once and told him of my refined sugar problem and he told me that was impossible. Doctors aren't the best people to ask about this questions especially the young doctors. Over the years I have found that if I stayed away from refined sugar I begin to look different and feel better. A good book on this subject is "Sugar Blues" by William Duffey. Respect your body and it will respect you.

gilligan Enthusiast

I haven't felt great after almost a year of diagnosis.  I got tired of hearing from my old g.i. that gluten is  somehow sneaking into my diet.  Went to a new g.i. who ordered blood work, stool test, and hydrogen blood test.  I kept telling him that I swear sugar has to be a problem. First, blood tests showed that my antibodies were nearly undetectable, so he was surprised about that, but congratulated me on following my gluten-free diet so well.  Test results show that I had SIBO (a bacterial problem in small intestine).  First, I was put on a low fodmap diet and issued antibiotics.  Overnight improvement!  I needed a second round of antibiotics, and I'm now onto the challenge phase of the diet introducing forbidden foods back into the diet.  He asked that I see the dietician before trying it on my own.  For the first time in two years, I feel normal.  He suggested a book for me to read called The Complete Low-FodMap Diet by Peter Gibson, MD.  Hope this helps!

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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