Jump to content
  • 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

Gluten Free, Dairy Free, Fructose Free...how Am I Still Sick?


TummyTrubble

Recommended Posts

TummyTrubble Newbie

I am feeling so frustrated! :(

I'm on month 5 of fructose free.

I'm on day 45 of gluten free (I do not have celiac disease...just wondering if I'm sensitive to it) and around day 60 of dairy free.

How is it that I am still so sick that I'm having symptoms every day?!?!

Two weeks ago I accidentally got into the tiniest bit of corn syrup and as a result, got really sick. This entire week I have eaten nothing except water, chicken with salt and a tiny bit of black pepper and white rice with salt. For breakfast, lunch, and dinner. I am still having symptoms.

What am I missing?!? I don't know what else to do.

Is it possible I am having an issue with my medications or vitamins? I have tried to pick carefully but my probiotic has caramel color in it and my omeprazole has lactose monohydrate. Right now I am only taking a multivitamin (did away with the iron and calcium for now) and it has nothing suspect.


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



Celiac.com Sponsor (A8-M):



txplowgirl Enthusiast

Did you replace your cooking pans, toaster, wooden or plastic cutting boards, wooden spoons, collander? Do you share a home with other gluten eaters? Have you replaced your shampoos and conditioners? Do you have household pets that you feed gluten food to? All of these are high cross contamination issues. Then again you may have developed other food entolerances. Like are you eating more soy products. Are you eating more gluten few processed foods also just a thought. Any kind of pepper makes me sick

GFinDC Veteran

Also, Have you tried eliminating rice? And yes, vitamins and meds need to be checked or eliminated also. Also any drinks, like tea, or coffee etc.

Everything you consume is a possible problem. You can't assume anything is safe until you try eliminating it for a while.

TummyTrubble Newbie

I do share a home with a gluten eater - my husband. I haven't replaced any of our dishes, although one of them blew up in the oven yesterday, so that's the end of that one. :rolleyes:

I don't have any wooden spoons - have been just using metal and glass cookware. I haven't used a toaster or a colander in at least 3 or 4 months. I do use the BBQ a lot but my husband's stuff goes on the right and mine on the left just to prevent any sort of cross contamination.

The dogs' food is hypoallergenic fish and sweet potato...it shouldn't have gluten in it.

I have not changed my shampoo and conditioner. Is this a possible source of gluten?

I don't eat any processed food or soy. I have a new calcium supplement with soy in it but I'm a wary of it...haven't opened the bottle yet. I have not tried eliminating rice. I'm scared to! I don't know what else to eat. I bought some Quinoa but haven't tried it yet. I'm doing the elimination diet thing right now and am trying to change something only every 3 or 4 days. I eliminated my multi-vitamin after finding inositol in it...wondering if maybe that was an issue. A few days time should show me if that is helping or not.

T.H. Community Regular

Two weeks ago I accidentally got into the tiniest bit of corn syrup and as a result, got really sick. This entire week I have eaten nothing except water, chicken with salt and a tiny bit of black pepper and white rice with salt. For breakfast, lunch, and dinner. I am still having symptoms.

Could it be corn?

Corn is in iodized salt to stabilize the iodine.

Corn is also used in the processing of white rice, I believe. Either during processing or polishing - I can't recall exactly, only that those who are sensitive to corn often have trouble with white rice.

If corn is fed to the chicken, the skin will often have a little of the corn protein left on the skin due to the defeathering process where whatever hasn't been fully cleaned from the bowels releases (there is usually at least a little left). Although this also applies to gluten, too.

And if corn syrup made you sick? Maybe that's it?

If you want to try and avoid corn, I'd recommend checking out a corn allergy website, like Open Original Shared Link

It is insanely hard to avoid, especially because it is used in many things where it doesn't have to be reported. Added to yeast to help make a better consistency as it's made into cakes, or sometimes cornstarch between paper plates to keep them from sticking - crazy stuff!

Hope you find out what's up with all of this soon!

If you want to come down to the super-sensitive celiacs section of the forum, while you may not be super- sensitive to gluten, we might be able to help you track some stuff down. A lot of us there have had to learn about many weird places that processing and farming can add allergens into our food that we'd never even think about. :-)

TummyTrubble Newbie

Could it be corn?

Corn is in iodized salt to stabilize the iodine.

Corn is also used in the processing of white rice, I believe. Either during processing or polishing - I can't recall exactly, only that those who are sensitive to corn often have trouble with white rice.

If corn is fed to the chicken, the skin will often have a little of the corn protein left on the skin due to the defeathering process where whatever hasn't been fully cleaned from the bowels releases (there is usually at least a little left). Although this also applies to gluten, too.

And if corn syrup made you sick? Maybe that's it?

If you want to try and avoid corn, I'd recommend checking out a corn allergy website, like Open Original Shared Link

It is insanely hard to avoid, especially because it is used in many things where it doesn't have to be reported. Added to yeast to help make a better consistency as it's made into cakes, or sometimes cornstarch between paper plates to keep them from sticking - crazy stuff!

Hope you find out what's up with all of this soon!

If you want to come down to the super-sensitive celiacs section of the forum, while you may not be super- sensitive to gluten, we might be able to help you track some stuff down. A lot of us there have had to learn about many weird places that processing and farming can add allergens into our food that we'd never even think about. :-)

Thank you so much! What a lot of great information.

We used non-iodized salt in our house because my husband has thyroid disease and meniere's (sp?) disease.

I definitely have an issue with corn syrup...maybe all corn. My gastro. told me to avoid all corn products when he diagnosed me with fructose malabsorption. I will have to do some research about how it's used in the production of rice - thanks for that! And I didn't even think of chicken being fed corn...yikes.

The good news is after ditching my vitamin I have found some relief....here's to hoping it gets better still!

And I will look for the super-sensitive section. Thank you very much!! :)

Marz Enthusiast

The good news is after ditching my vitamin I have found some relief....here's to hoping it gets better still!

And I will look for the super-sensitive section. Thank you very much!! :)

Hoo boy, definitely suspect your vitamins, or any digestive enzymes you might be taking. Any supplement might be suspicious. I assume you've already checked medication (especially anything you take daily) and even anything you touch - body lotions/soap/shampoo - you won't eat it obviously, but small amounts can ride from hands to fruit that you're eating, or lips. Does your family still eat gluten - inside or outside of the house, do you kiss them without getting them to brush first?

Hope you find the culprit! Rice can be replaced with potato or sweet potato for your starch requirements, there's all the pseudo grains like amaranth, quinoa, millet. Quinoa - make sure you rinse this very well before cooking, it has a natural chemical on the outside of the seed which can cause stomach upset. I can't eat it unfortunately, seems to upset my stomach regardless of how well it's rinsed.


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



Celiac.com Sponsor (A8-M):



TummyTrubble Newbie

Hoo boy, definitely suspect your vitamins, or any digestive enzymes you might be taking. Any supplement might be suspicious. I assume you've already checked medication (especially anything you take daily) and even anything you touch - body lotions/soap/shampoo - you won't eat it obviously, but small amounts can ride from hands to fruit that you're eating, or lips. Does your family still eat gluten - inside or outside of the house, do you kiss them without getting them to brush first?

Hope you find the culprit! Rice can be replaced with potato or sweet potato for your starch requirements, there's all the pseudo grains like amaranth, quinoa, millet. Quinoa - make sure you rinse this very well before cooking, it has a natural chemical on the outside of the seed which can cause stomach upset. I can't eat it unfortunately, seems to upset my stomach regardless of how well it's rinsed.

Yeah, I think at this point I can safely say that the multi-vitamin I was taking was not helping. I found out that it has inositol in it, which I think I have issues with. I was mildly suspicious of my probiotic because it has caramel color in it, so I switched to one with far fewer inactive ingredients. I think this one is doing better for me.

What do I look for in soap, shampoo, etc as far as gluten is concerned? Do they actually list gluten as an ingredient or do they call it something else? Seems like companies are really good at hiding things in their ingredients lists.

My husband is still a gluten eater and no, I don't make him brush his teeth before he kisses me! Maybe I should.

I did buy some Quinoa, but I haven't quite gotten to the point of introducing it. I will be sure to rinse it well - thank you for the heads up on that!

mushroom Proficient

What do I look for in soap, shampoo, etc as far as gluten is concerned? Do they actually list gluten as an ingredient or do they call it something else? Seems like companies are really good at hiding things in their ingredients lists.

Look for things like hydrolyzed wheat protein, etc. Usually the name will have wheat, soy, corn in it (if these are things you are avoiding) Be wary of hydrolyzed vegetable protein.

My husband is still a gluten eater and no, I don't make him brush his teeth before he kisses me! Maybe I should.

This is an absolute guarantee of cross-contamination.

I did buy some Quinoa, but I haven't quite gotten to the point of introducing it. I will be sure to rinse it well - thank you for the heads up on that!

I would personally hold off on the quinoa until you have stopped reacting to things. Many of us have problems with quinoa too.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.