Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Else With Surgar Allergy And Celiac?


GFDahlia

Recommended Posts

GFDahlia Rookie

Hi, is there anyone else out there dealing with not being able to have any refined sugars as well as the celiac dietary limits? Guess I am just looking for moral support haha....no gluten ok but sugar too is killing me!@!!!

THanks

Dahlia


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



newlyfree Rookie

Hi Dahlia - I'm doing this right now as well, so you're not alone!!

Currently I'm not eathing: beans, nuts, sugars, yeasts, nightshades, dairy and gluten. It's a lot to cut out. But I seem to be feeling much better for it. I think my body just really needed a break after 10 years of misdiagnosis. :)

So, can you have honey? There are a few recipe sites for a diet called "The Specific Carbohydrate Diet' that only use honey as a sweetener - heavy on nut flours though.

burdee Enthusiast
Hi, is there anyone else out there dealing with not being able to have any refined sugars as well as the celiac dietary limits? Guess I am just looking for moral support haha....no gluten ok but sugar too is killing me!@!!!

THanks

Dahlia

Were you diagnosed (by allergy blood test) with antibody reactions to cane sugar or honey? Or do you just overeat sweets? Unless you know whether certain foods cause antibody reactions, you could suspect allergies to ANYTHING. It's difficult to determine allergies by 'elimination' unless you only eat one food each day during your elimination diet test. People can have allergies even to foods considered 'safe'.

My doc thought I had Candida because I seemed to react to sweets. However ELISA blood allergy tests showed I really just had a cane sugar allergy. I can still eat agave, honey, beet sugar, rice syrup, corn syrup and fruit based sweetners without reactions. My reactions to eating cane sugar are intense (48 hour) tachycardia, nausea, headaches and panic. I do react to sorbitol (and other 'tol' sweetners like mannitol and xylitol) with cramping, bloating and diarrhea. However I suspect this is a leaky gut based intolerance, rather than a true allergy.

BURDEE

sixtytwo Apprentice

Is there actually a test for an allergy to white sugar? I decided to not eat white sugar and flour so as to lose some undesired weight. It worked, I lost 5# the first month, eating meat, fruit and veggies. I do eat potatoes and rice occasionally. Lots of gluten-free products are high in calories such as the baked goods and anything that is regular,not light, like maple syrup.

Barbara

burdee Enthusiast
Is there actually a test for an allergy to white sugar? I decided to not eat white sugar and flour so as to lose some undesired weight. It worked, I lost 5# the first month, eating meat, fruit and veggies. I do eat potatoes and rice occasionally. Lots of gluten-free products are high in calories such as the baked goods and anything that is regular,not light, like maple syrup.

Barbara

The basic ELISA (blood allergy) test looks for IgG antibody reactions to 96 commonly eaten foods including honey, cane sugar and cocoa bean (chocolate). However overeating sweets is not necessarily a symptom of 'allergy'. Some people want to blame their tendency to overeat sweets on 'addiction' influenced by allergy. However, they may restrict sweets to decrease calorie consumption and then crave what they restrict. Without obvious, immediate symptoms, like cramps, bloating, tachycardia, headaches, nausea, for overeating moderate amounts of sweets, it's difficult to keep restricting foods just to decrease calories. So they may alternate between restricting and overeating.

Since celiacs have so many restrictions for gluten abstinence (and some have additional allergy restrictions like dairy, soy, eggs, etc.), I believe restricting when, why and how much we eat, rather than specific foods (other than diagnosed allergies) is an easier way to reduce calories. If we ONLY eat when we are physically hungry (not thirsty, tired, bored or stressed) and stop when we're physically satisfied (not stuffed), we can limit calorie consumption to what our body needs for hunger, rather than eating for nonphysical needs. I agree that SOME gluten free breads and cereals are higher in calories than gluten containing breads. However, there are lower calorie gluten free breads available. Ener-G foods offers a large variety of breads, beyond the 'white rice' or 'tapioca' breads. We like 'corn loaf' at 40 calories per slice and their 'light' breads. Also we can consider open faced sandwiches or 1 slice of toast rather than 2, to limit calories. However if we obey our hunger/fullness cues, we will naturally limit the amounts, times and reasons we eat.

BURDEE

Rachel--24 Collaborator
My doc thought I had Candida because I seemed to react to sweets. However ELISA blood allergy tests showed I really just had a cane sugar allergy. I can still eat agave, honey, beet sugar, rice syrup, corn syrup and fruit based sweetners without reactions. My reactions to eating cane sugar are intense (48 hour) tachycardia, nausea, headaches and panic. I do react to sorbitol (and other 'tol' sweetners like mannitol and xylitol) with cramping, bloating and diarrhea. However I suspect this is a leaky gut based intolerance, rather than a true allergy.

BURDEE

It was always my understanding that IgG antibodies are more indicative of leaky gut. The ELISA test (for IgG antibodies) is actually identifying intolerances rather than true allergies. IgG mediated immune responses can be temporary and are generally caused by a leaky gut.

Its the IgE antibodies which indicate a "true" allergy. You can also have both types of antibodies for the same food. If there is no IgE immune response its typically viewed as an intolerance.

burdee Enthusiast
It was always my understanding that IgG antibodies are more indicative of leaky gut. The ELISA test (for IgG antibodies) is actually identifying intolerances rather than true allergies. IgG mediated immune responses can be temporary and are generally caused by a leaky gut.

Its the IgE antibodies which indicate a "true" allergy. You can also have both types of antibodies for the same food. If there is no IgE immune response its typically viewed as an intolerance.

If IgG antibody reactions are 'intolerances', rather than allergies, how do you distinguish IgG reactions to dairy (milk 'casein' protein) from problems with digesting lactose (milk sugar) or lactose 'intolerance'? I've read lots of disagreement about what to call an 'allergy'. I don't consider lactose intolerance (caused by deficiency of lactase) a true allergy. I also have a sorbitol intolerance (symptoms of bloating, gas and cramps after ingesting sorbitol or any 'tol' sweetners). How do I differentiate sorbitol 'intolerance' from IgG reactions to milk, soy, eggs, cane sugar, etc.? What about IgA reactions (which Enterolab tests indicate)? Are those also considered 'intolerances'?

Despite the 'semantics' confusion, if my test results showed high IgG or high IgA reactions, I use the word 'allergy' when I ask restaurant personnel to avoid using my 'diagnosed' reaction foods in my entrees. They listen to the word 'allergy' more than words like 'sensitivity' or 'intolerance'.

BURDEE


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
If IgG antibody reactions are 'intolerances', rather than allergies, how do you distinguish IgG reactions to dairy (milk 'casein' protein) from problems with digesting lactose (milk sugar) or lactose 'intolerance'? I've read lots of disagreement about what to call an 'allergy'. I don't consider lactose intolerance (caused by deficiency of lactase) a true allergy.

As far as I know there is no antibody production involved in lactose intolerance....its diagnosed with the hydrogen breath test.....its not an allergy...its not even related in any way.

You can distinguish between the two with proper testing. Blood antibody tests can identify an IgE allergy (or IgG intolerance) to dairy and this is totally unrelated to lactose intolerance. You are totally correct in not considering LI to be a true allergy.

Lactose intolerance is caused by a person not producing enough of the enzyme lactase....they cannot digest the milk sugar.

How do I differentiate sorbitol 'intolerance' from IgG reactions to milk, soy, eggs, cane sugar, etc.? What about IgA reactions (which Enterolab tests indicate)? Are those also considered 'intolerances'?

If you react to the sorbitol with those digestive symptoms that you describe then you are likely experiencing an intolerance (caused by leaky gut as you mentioned). It wouldnt be classified any differently than any other IgG response you might be experiencing from the leaky gut.

I'm not aware of any test that specifically looks for reactions to things like sorbitol...other than alternative type testing (muscle testing, electrodermal screening, etc). I've been tested for additives with these types of tests.

IgA antibodies identify sensitivities....not "true" allergies. Enterolab's testing is looking for a sensitivity to gluten...not an allergy to gluten. So yes...it would be considered a "sensitivity" or an "intolerance"....same as the yeast, egg, soy and casein they are testing.

Besides the biopsy....Celiac Disease is diagnosed with the blood tests (IgA/IgG). As we know Celiac is not an allergy so thats why they arent looking at IgE antibodies to diagnose Celiac.

burdee Enthusiast
As far as I know there is no antibody production involved in lactose intolerance....its diagnosed with the hydrogen breath test.....its not an allergy...its not even related in any way.

You can distinguish between the two with proper testing. Blood antibody tests can identify an IgE allergy (or IgG intolerance) to dairy and this is totally unrelated to lactose intolerance. You are totally correct in not considering LI to be a true allergy.

Lactose intolerance is caused by a person not producing enough of the enzyme lactase....they cannot digest the milk sugar.

If you react to the sorbitol with those digestive symptoms that you describe then you are likely experiencing an intolerance (caused by leaky gut as you mentioned). It wouldnt be classified any differently than any other IgG response you might be experiencing from the leaky gut.

I'm not aware of any test that specifically looks for reactions to things like sorbitol...other than alternative type testing (muscle testing, electrodermal screening, etc). I've been tested for additives with these types of tests.

IgA antibodies identify sensitivities....not "true" allergies. Enterolab's testing is looking for a sensitivity to gluten...not an allergy to gluten. So yes...it would be considered a "sensitivity" or an "intolerance"....same as the yeast, egg, soy and casein they are testing.

Besides the biopsy....Celiac Disease is diagnosed with the blood tests (IgA/IgG). As we know Celiac is not an allergy so thats why they arent looking at IgE antibodies to diagnose Celiac.

I think you misunderstood my question. I know how IgG, IgA and lactose intolerances are tested. I wanted to know how to differentiate VERBALLY or SEMANTICALLY between IgG reactions to foods (for example, casein protein) and lactase enzyme deficiency reactions (often called 'lactose intolerance'). Yeah, I also know celiac disease is a gluten 'intolerance'. However there should be a semantic way of differentiating between 'lactose' intolerance and IgG food reactions and even gluten reactions. What have you read about that?

I also know my sorbitol reactions are caused by leaky gut. Since those are considered 'intolerances', could the other IgG food reactions also be caused by leaky gut? Is that too much of a stretch to consider? That sure would explain why I have all these food sensitivities or intolerances or whatever. I have painful reactions when I eat any of those foods which showed high IgA or IgG reactions on ELISA and Elab tests. What do you know about the leaky gut and IgG mediate reaction symptoms? Is there a connection?

BURDEE

Rachel--24 Collaborator
I think you misunderstood my question. I know how IgG, IgA and lactose intolerances are tested. I wanted to know how to differentiate VERBALLY or SEMANTICALLY between IgG reactions to foods (for example, casein protein) and lactase enzyme deficiency reactions (often called 'lactose intolerance'). Yeah, I also know celiac disease is a gluten 'intolerance'. However there should be a semantic way of differentiating between 'lactose' intolerance and IgG food reactions and even gluten reactions. What have you read about that?

Oh...I got it...sorry for the confusion. :)

I guess there has never been a time where I've needed to differenciate other than when giving an explanation here on the board (or other boards).

I dont have any known "true" allergies. I have leaky gut and therefore have become intolerant to most foods, chemicals, etc. I call these sensitivities or intolerances and its my understanding that these will go away with proper treament.

I'm currently being treated for multiple issues (which have led to the leaky gut situation) and the Dr.'s all say that the intolerances will diminish....although we are not sure about gluten. That is something I can test later on when I'm completely healed (I do not have Celiac).

If I were eating out I would probably use the term "allergy" for the same reason you do....although I do not eat out so I havent had to deal with that.

Technically...the way to differenciate is that an IgE reaction would be referred to as an allergy....and everything else would be an intolerance....including the lactose intolerance. All of these can be temporary (except a diagnosis of Celiac)...including the lactose intolerance. Whether its caused by IgG antibodies, IgA antibodies or enzyme deficiencies....its still creating an intolerance to that food.

If for some reason the enzyme for digesting gluten and casein (DPP-IV) is inactivated (mercury can cause this) and an immune response occurs as a result....then its an intolerance. Enzyme function can return in that case....so long as the underlying cause is addressed.

Food intolerances are far more common than actual allergies.

I also know my sorbitol reactions are caused by leaky gut. Since those are considered 'intolerances', could the other IgG food reactions also be caused by leaky gut? Is that too much of a stretch to consider? That sure would explain why I have all these food sensitivities or intolerances or whatever. I have painful reactions when I eat any of those foods which showed high IgA or IgG reactions on ELISA and Elab tests. What do you know about the leaky gut and IgG mediate reaction symptoms? Is there a connection?

Yes....absolutely. There is definately a connection. Thats what I was saying in my first post.

It was always my understanding that IgG antibodies are more indicative of leaky gut. The ELISA test (for IgG antibodies) is actually identifying intolerances rather than true allergies. IgG mediated immune responses can be temporary and are generally caused by a leaky gut.

This is one reason why Celiac isnt usually diagnosed with *only* positive IgG bloodwork. Those antibodies can be elevated for reasons other than Celiac...and its usually involving leaky gut.

Most of the additional intolerances we experience are a direct result of the leaky gut...to correct that you'd have to determine the cause of the leaky gut and then proceed with the proper treatment. Celiac itself can lead to a leaky gut but that situation should improve on a gluten-free diet. If the leaky gut persists there are likely other things contributing.....usually bacteria, fugus and parasites.

burdee Enthusiast
Food intolerances are far more common than actual allergies.

Yes....absolutely. There is definately a connection. Thats what I was saying in my first post.

This is one reason why Celiac isnt usually diagnosed with *only* positive IgG bloodwork. Those antibodies can be elevated for reasons other than Celiac...and its usually involving leaky gut.

Most of the additional intolerances we experience are a direct result of the leaky gut...to correct that you'd have to determine the cause of the leaky gut and then proceed with the proper treatment. Celiac itself can lead to a leaky gut but that situation should improve on a gluten-free diet. If the leaky gut persists there are likely other things contributing.....usually bacteria, fugus and parasites.

WOW! Thanks for the info. I have been absolutely gluten free for almost 3 years but keep discovering new IgG 'intolerances' both in symptoms and different forms of ELISA tests. I also had 3 tests for bacterial dysbiosis. The first time I had really low good bacteria (no bifidobacteria) and high Klebsiella (bad bacteria). We treated that with caprylic acid and probiotics and I felt really good for awhile. Then I got some food born bacteria (from tainted meat) on vacation, got really sick (nausea, vomiting all night) and my usual gut symptoms (cramping, bloating, gas) returned. When I tested again, I had NO good bacteria and higher than normal E. Coli (milder form, but still not good). After more probiotics I felt only a little better. 6 months later my good bacteria were still really low. So I took a 2 week course of really intensive probiotics (170 billion live organisms per daily dose). I really started feeling better after that (much less gut symptoms). I still had some slight daily cramping pain. So I did another ELISA test for herbs and spices which showed strong reactions to vanilla and nutmeg. After eliminating those, the cramps disappeared. However I wonder whether I still have leaky gut, which might allow more intolerances to develop. I have enough already ... SIGH

BURDEE

GFDahlia Rookie

Well so far as I am able to asertain from my family...as a child I had huge asthma problems which promted A LOT of tests including allergy tests and all that. They were told that I was not to have refined sugars at all. Honey or things like agave nectar are ok...but not refined sugars. Not sure exactly what the issue is in medical terms, but basically a lot of sugar would trigger an asthma attack or pave the way for huge immune problems. Never met anyone else with the problem so far. But, I am glad to know I am not the only one out there having to avoid sugar and gluten!!

Thanks

Dahlia

  • 1 month later...
jewi0008 Contributor
Hi Dahlia - I'm doing this right now as well, so you're not alone!!

Currently I'm not eathing: beans, nuts, sugars, yeasts, nightshades, dairy and gluten. It's a lot to cut out. But I seem to be feeling much better for it. I think my body just really needed a break after 10 years of misdiagnosis. :)

So, can you have honey? There are a few recipe sites for a diet called "The Specific Carbohydrate Diet' that only use honey as a sweetener - heavy on nut flours though.

If you cut all of that from your diet, what do you eat?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,370
    • Most Online (within 30 mins)
      7,748

    Redred1
    Newest Member
    Redred1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...