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

Please Help! New Celiac In Need Of Advice


MandaSue

Recommended Posts

MandaSue Newbie

Hi everyone. I am looking for advice on what i possibly could have eaten last night that caused a reaction. Any guesses???

I have had minor undiagnosed "stomach issues" my whole life and was diagnosed as a Celiac about 3 - 4 weeks ago? I have been eating a very strict gluten free diet ever since and have seen lots of positive differences. I know it probably takes longer than this to really know though??

Last night, I made a family recipe with (what I thought were completely gluten free ingredients) and I had an "upset stomach"-- mild pain, "tightness, "gassy",-- these are typically the symptoms I had frequently before I was diagnosed.

The recipe had:

-lean ground beef (which i've eaten in other gluten-free recipes and have been fine)

- instant mashed potatoes (package said "gluten free" and only prepared with water)

-canned creamed corn (Walmart brand that contained : corn, water, sugar, modified cornstarch, salt) the package said "a naturally gluten free food," which i know is just the manufacturer's way of protecting themselves b/c they are not making any claims about the possibility of cross contamination) -- i went with this brand b/c it was the only one that said "modified cornstarch" instead of "modified food starch" and i thought it was the safer choice.

-- cheddar cheese (i've been eating cheese and dairy and have not had a problem.

Do you see an ingredient that could have been the "culprit"? the corn maybe? or is it possible that it was unrelated? like not drinking enough water or eating too much? or drinking too much coffee with food throughout the day?? (although symptoms feel very much like how i felt frequently before i was diagnosed). Oh, and my boyfriend also ate all this and was fine-- that's what makes me think it was gluten-- SOMEHOW.

THE OTHER PROBLEM.... I usually try to "isolate" a new food so i know if i have a reaction or not. However, since i thought it was ok, i also had:

apple sauce (said "naturally gluten-free...") - i've had this before and been fine

biscuits that i made myself with gluten-free bisquick mix (and I had a diff batch the day before and was fine)

gluten-free pumkin cookies-- that i made myself and checked the ingredients.

Sorry for the long post. please let me know your theories/guesses/advice. Thanks!!!!


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Welcome,

The phrase, "a naturally gluten-free food," has nothing to do with cross-contamination. It is because labeling a food "gluten-free" is only allowed if that is a distinguishing characteristic of that particular brand of the food. You can have "gluten-free bread" because bread often/usually contains gluten. You can't have "gluten-free apples" because apples are always gluten-free.

Unless you have other food tolerance issues, "modified food starch" is safe. Wheat was always very rare, and today it must be explicitly declared. It is commonly tapioca with corn running second.

At four weeks in, you may still have healing in progress. Until healing is complete, it is not unusual to have a reaction to something that is gluten-free.

lynnelise Apprentice

Sometimes when you are still healing you'll just have a bad day here or there and it's not necessarily caused by gluten.

I've read other threads saying newly gluten free people could have cross reactions to coffee. At least one testing company (Cyrex) claims so.

ravenwoodglass Mentor

We often have ups and downs in the beginning and it doesn't help that some of us will have delayed reactions. It may not have been the meal that you ate right before you felt ill that got you it might have even been something from a day or two before. Have you taken care to get a new toaster, strainer and replaced scratched non-stick pans and wooden utensils? If not that needs to be done. Also if you have a significant other make sure they are brushing their teeth before you do any kissing. That can get us too.

T.H. Community Regular

Also if you have a significant other make sure they are brushing their teeth before you do any kissing. That can get us too.

I was just thinking that - if he had gluten within a couple hours of seeing you and ya'll kissed, that can do it. Or if you kissed his skin and he had some kind of lotion/sunblock/powder with gluten on it on his skin. Or kissed his hair and his shampoo has gluten - although often that's self-correcting, as it is washing out of his hair, mostly. You might want to take care when using your own, however, if you tend to rinse off the shampoo down your face where it runs across your lips and might get into your mouth.

...bizarre, eh?

eatmeat4good Enthusiast

That's about the right time frame for dairy sensitivity...at least that is what happened to me. I happily kept eating my cheese and dairy...and thinking I wouldn't be one of "them". Well, it sure took me a while to realize it was actually dairy making me feel lousy...several weeks after giving up gluten... I know you don't wanna hear that...and neither did I...but giving up dairy sure cut down on what I thought was CC incidents. Just sayin....

  • 2 weeks later...
Fairy Dancer Contributor

Id blame the corn lol


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



Celiac.com Sponsor (A8-M):



Jennaand2kids Newbie

manda sue....it sounds fine....what spices did you use? that has gluten in it sometimes...

also, do you often have dairy? i was told when you are newly diagnosed you are supposed to stay away from dairy because it doesnt allow the villi to heal that was damaged with gluten?

Also do you mind sharing your pumpkin cookie receipe?

Bubba's Mom Enthusiast

The meal sounds innocent, but you may have had something the day before and as it went through your system symptoms were triggered?

I also would question the sources for anything you've baked. I'm 3 months into gluten-free and went to a gluten-free bakery yesterday. I bought several different cookies and a couple of scones.

I ate the scone with tea in the afternoon and felt fine. After supper I ate 2 different cookies. Within a couple of hours I started getting hyper and gerd, etc. just like I had been glutened. I was up all night and very ill.

I called the bakery this morning to check that what I bought was truly gluten-free. I talked to the baker. She said the sugar cookies were made with Bob's Red Mill gluten-free flour. I've heard other eople say they react to BRM products, but never guessed I'd be one of them. The baker said she's heard of very sensitive Celiacs having a problem like I did. She told me in the future to ask which items have that flour in them.

domesticactivist Collaborator

What about your cooking utensils, baking sheets, etc? We found that we became more sensitive of slight amounts. I have a post on the blog linked from my profile called going 100% gluten free that might help you identify some potential sources of contamination.

  • 3 weeks later...
Michelle1234 Contributor

I'm also going to chime in on the cooking utensils. I found as I eliminated gluten I got more sensitive. Everything that had a seam in it it had to be replaced, mixer, toaster, pots and pans that had a handle with a seam, spoons, etc. If there was a scratch or crack I replaced that also. After I did that then I no longer got sick from innocent meals in my own house. Also had to have hubby go gluten free as he was incapable of keeping his gluten coated hands from contaminating the microwave, refrigerator and sink handles. He didn't mind as he would rather do that than have me complain at him for spreading crumbs.

Don't forget measuring cups and measuring spoons.

Michelle

AVR1962 Collaborator

By chance would there be any xanthun gum in the gluten free products you used to make the recipes? It does not set well with me.

Sherry53 Newbie

I was diagnosed in Sept. and have joined a local support group with about 25 people. At the last meeting someone mentioned that the grated cheese that you buy in a bag has flour added to it, to keep it from sticking together. Is it possible that you used this type of cheddar cheese in your recipe?

I find that I have good days and bad days and was wondering if I had actually consumed gluten or if as many of you are saying, am just going through the healing process. This has caused me to second guess almost everything that goes into my mouth. I almost wish I did get an immediate reaction so I would know what to avoid. I have questions about quite a few foods...will be so happy in 2012 when mandatory gluten labeling becomes law here.

kareng Grand Master

I was diagnosed in Sept. and have joined a local support group with about 25 people. At the last meeting someone mentioned that the grated cheese that you buy in a bag has flour added to it, to keep it from sticking together. Is it possible that you used this type of cheddar cheese in your recipe?

I find that I have good days and bad days and was wondering if I had actually consumed gluten or if as many of you are saying, am just going through the healing process. This has caused me to second guess almost everything that goes into my mouth. I almost wish I did get an immediate reaction so I would know what to avoid. I have questions about quite a few foods...will be so happy in 2012 when mandatory gluten labeling becomes law here.

Its usally corn starch added to shredded cheese. If they added flour, they would need to label it. Think about flour. Flour sticks together when wet or damp (like cheese). Its one of the properties of wheat flour that is hard to duplicate in gluten-free bread

Archived

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

  • 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 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    2. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • 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
      @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
      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
      @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
      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
      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.