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

Following gluten-free And Sick (One Year Later)

Kathleen Smith

Recommended Posts

Kathleen Smith Contributor
Kathleen Smith
Posted

Just need some advice or a pep talk.....

I am sick with extreme nausea again (it happened about 6 months after going gluten-free b/c of hidden gluten I guess-rookie mistakes). Now another 6 months later (1 year total, my last bloodwork was GREAT too) after I eat lunch (no matter what it is) I get VERY, VERY nauseou.

I did go out to eat a couple of times the past two months for work, but I had the group go to Charlie Browns and ordered off gluten-free Menu. Then twice with family I went to eat at a Resturant which I called ahead b/c they were listed as gluten-free "Friendly". They were very knowledgable about it and cooked me risotto in seperate pan and understood about hidden gluten in sauces.

Could i be so sick from accidental glutening a year later????

The last time I got this nauseos (last Sept/Oct) I ran back to the GI doc and she ran tons of tests and couldnt find anything except my antibodies were raised so we blamed gluten.

I am going to a a celiac research center tomorrow!!!! Hopefully that will help/

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

Celiac.com Sponsor (A8-M):


Issy Newbie
Issy
Posted

There are so many here that may have a better answer for you...however, I thought I would mention what it's been like for me. What ended up working for me.

I never felt like I was making any progress in symptoms until I did 3 things:

1. I gave up all grains per the Paleolithic diet (as well as legumes and white potatoes - the anti-nutrient compounds made by these plants can continue to make us ill. After all, the plants make these chemical compounds to discourage animals from eating them before they get a chance to go to seed)

2. I gave up dairy except for all-natural heavy cream in AM coffee and pastured butter (Kerry Gold from Ireland). It was brought to my attention that most celiacs cannot re-introduce cheeses and milk for a while. Some won't be able to use cream and butter either.

3. I got a blood glucose monitor and checked one and two hours after eating and made sure my blood sugar wasn't ever going over 120 mg/dl. This is something I think we should be taught to do from a very young age, as part of our daily care, like brushing our teeth. Now I can stay under 100, no matter what I eat. Newer research says this is optimal.

It just never worked for me when I was skirting around gluten and eating other starches and grains. I felt terrible after meals unless I was eating fats and proteins and non-starchy vegetables. Some of the replacement flours and starches could spike my blood sugar worse than anything else I ate. Udi's bread, so wonderful - yet it spiked my blood sugars to almost 170 - just one small piece of the whole grain type! That high a number is flirting with diabetes for sure. I had a cupboard filled with both corn and rice type pastas from all the major gluten-free manufacturers. But I didn't feel well and I had constant DH outbreaks and migraines 3-5 times a week.

One day, I found a podcast by a guy named Robb Wolf, that has been the absolute best source of health information for me. My life hasn't been the same since. Robb cannot eat gluten and believes that most everyone out there would be better off without it. His podcasts are the absolute best out there. Period. He is coming from a research background and is so incredibly knowledgeable in health and fitness - had I only known about him years ago. His podcasts are his answers to listener's questions, so there is a wide variety of topics covered. I would suggest downloading all of them - go to his website to get the 2009 ones. Some of the stuff is workout oriented, but a lot of it is nutrition and illness. Website is robbwolf DOT com.

There is also Dr. Kurt Harris' blog at paleonuDOTcom. Again, invaluable information and the detailed explanations for why avoiding gluten may not be the complete answer for us. For any of us. I devour everything these guys write and say. It causes a complete re-thinking of everything I thought I knew about providing nourishment to my body. They both have additional links on their sites to some of the best, most cutting edge thoughts on how to become well again. Dr. Harris' links were ALL added to my bookmarks.

You should also try to find a copy of a book at your library titled "Lights Out: Sleep, Sugar and Survival." Author is T.S. Wiley. It's from 2002. Robb Wolf talked about it and it was a VERY good read.

Sorry if I seem like I'm on a soapbox. But I was doing gluten free to near perfection, including replacing ALL my cookware and utensils. And still I was not having the progress towards health that I thought I should. Someone on one of these boards even mentioned eating paleo - maybe not this one, perhaps another board. And that comment just slipped by me until later on, when I begun to understand what it was. That was a real "Ah-Ha" moment for me.

Just my thoughts, YMMV. It changed my life for the better.

Issy Newbie
Issy
Posted

Well, I should say "make that 4 things."

Get rid of all vegetable oils. These are all high in Omega-6 which is very unstable when used for cooking and frying. In fact, it is probably oxidized when it leaves the bottling plant. They make us very ill.

I use coconut oil, bacon grease, clarified butter (ghee, that I make myself) for frying. I use extra virgin olive oil to dress salads and vegetables but never heat it because it's pretty delicate. I am trying to save up and justify the purchase of macadamia nut oil for a replacement for olive oil. I am NOT much of a fan of the taste of EV Olive oil. So I look forward to the Macadamia nut oil.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

When was your last period?

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hi, I'm somewhat new at this, but I was wondering if you have eliminated soy from your diet as well? I find that I get nausea when I eat products with soy in them. Many, many processed items have soy. Perhaps soy or something else beside gluten is causing your nausea. I did an elimination-type diet to figure out what else I needed to avoid besides gluten. If you have not tried this, I highly recommend it.

Looking for answers Contributor
Looking for answers
Posted

There are so many here that may have a better answer for you...however, I thought I would mention what it's been like for me. What ended up working for me.

I never felt like I was making any progress in symptoms until I did 3 things:

1. I gave up all grains per the Paleolithic diet (as well as legumes and white potatoes - the anti-nutrient compounds made by these plants can continue to make us ill. After all, the plants make these chemical compounds to discourage animals from eating them before they get a chance to go to seed)

2. I gave up dairy except for all-natural heavy cream in AM coffee and pastured butter (Kerry Gold from Ireland). It was brought to my attention that most celiacs cannot re-introduce cheeses and milk for a while. Some won't be able to use cream and butter either.

3. I got a blood glucose monitor and checked one and two hours after eating and made sure my blood sugar wasn't ever going over 120 mg/dl. This is something I think we should be taught to do from a very young age, as part of our daily care, like brushing our teeth. Now I can stay under 100, no matter what I eat. Newer research says this is optimal.

It just never worked for me when I was skirting around gluten and eating other starches and grains. I felt terrible after meals unless I was eating fats and proteins and non-starchy vegetables. Some of the replacement flours and starches could spike my blood sugar worse than anything else I ate. Udi's bread, so wonderful - yet it spiked my blood sugars to almost 170 - just one small piece of the whole grain type! That high a number is flirting with diabetes for sure. I had a cupboard filled with both corn and rice type pastas from all the major gluten-free manufacturers. But I didn't feel well and I had constant DH outbreaks and migraines 3-5 times a week.

One day, I found a podcast by a guy named Robb Wolf, that has been the absolute best source of health information for me. My life hasn't been the same since. Robb cannot eat gluten and believes that most everyone out there would be better off without it. His podcasts are the absolute best out there. Period. He is coming from a research background and is so incredibly knowledgeable in health and fitness - had I only known about him years ago. His podcasts are his answers to listener's questions, so there is a wide variety of topics covered. I would suggest downloading all of them - go to his website to get the 2009 ones. Some of the stuff is workout oriented, but a lot of it is nutrition and illness. Website is robbwolf DOT com.

There is also Dr. Kurt Harris' blog at paleonuDOTcom. Again, invaluable information and the detailed explanations for why avoiding gluten may not be the complete answer for us. For any of us. I devour everything these guys write and say. It causes a complete re-thinking of everything I thought I knew about providing nourishment to my body. They both have additional links on their sites to some of the best, most cutting edge thoughts on how to become well again. Dr. Harris' links were ALL added to my bookmarks.

You should also try to find a copy of a book at your library titled "Lights Out: Sleep, Sugar and Survival." Author is T.S. Wiley. It's from 2002. Robb Wolf talked about it and it was a VERY good read.

Sorry if I seem like I'm on a soapbox. But I was doing gluten free to near perfection, including replacing ALL my cookware and utensils. And still I was not having the progress towards health that I thought I should. Someone on one of these boards even mentioned eating paleo - maybe not this one, perhaps another board. And that comment just slipped by me until later on, when I begun to understand what it was. That was a real "Ah-Ha" moment for me.

Just my thoughts, YMMV. It changed my life for the better.

I couldn't agree with you more. I did all the same as well, haven't done the sugar testing, but that's next. Good info!

Looking for answers Contributor
Looking for answers
Posted

Take quality enzymes and probiotics with each meal has helped me tremendously. I would suggest you do the same, along with all the other advice given here (checked for other food allergies, eat whole, unprocessed foods, etc).

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

Celiac.com Sponsor (A8-M):


T.H. Community Regular
T.H.
Posted

Hmmm...well, a couple ideas, for what they are worth!

1. Could be that you have issues with more than just gluten. My GI doc says that most of his celiac patients end up having allergies or sensitivities to other foods, and that definitely applied to me. Certain foods now make me sick as a dog. Some of them were allergies, some of them don't show up on any medical tests, but after keeping a food journal and then testing to see how I feel if I eat them, we know that they are no good. So, that's definitely a possibility.

2. Fructose malabsorption. People with this have problems with grains, veggies, fruits...all sorts of things, if they have the right 'stuff' in them (info. about it here: Open Original Shared Link ). It's pretty new to the scene, so many doctors won't even think about it, if they know of it at all. It's also something that is caused, not inherited, and they are finding correlations between people with gut issues (like celiacs) and this condition.

Just need some advice or a pep talk.....

I am sick with extreme nausea again (it happened about 6 months after going gluten-free b/c of hidden gluten I guess-rookie mistakes). Now another 6 months later (1 year total, my last bloodwork was GREAT too) after I eat lunch (no matter what it is) I get VERY, VERY nauseou.

I did go out to eat a couple of times the past two months for work, but I had the group go to Charlie Browns and ordered off gluten-free Menu. Then twice with family I went to eat at a Resturant which I called ahead b/c they were listed as gluten-free "Friendly". They were very knowledgable about it and cooked me risotto in seperate pan and understood about hidden gluten in sauces.

Could i be so sick from accidental glutening a year later????

The last time I got this nauseos (last Sept/Oct) I ran back to the GI doc and she ran tons of tests and couldnt find anything except my antibodies were raised so we blamed gluten.

I am going to a a celiac research center tomorrow!!!! Hopefully that will help/

Northern Celiac Newbie
Northern Celiac
Posted

yes, you can definately get sick that easily. You are more sensitive to gluten then before. I am very careful when I eat out. just because they say gluten free you can't trust them. You need to call and ask questions. If ur going to eat out my advice is keep it simple as possible

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    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)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.