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

Making Food For Others


Melissa.77

Recommended Posts

Melissa.77 Rookie

Well Hello everyone.

 

         Im a brand new memeber and have been reading all these post and just soaking it all in. Im having a hard time with all this at this point and assumeit will get easier at one point. I am a mother of 4 kids so making food for them has even been gettting me sick too does anyone know what to do in this situation. Im very stressed out with it all. I cant even get myself out of bed someday because im so sick or at times Im just depressed. Any Idea for help


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



Celiac.com Sponsor (A8-M):



  • Replies 62
  • Created
  • Last Reply
kareng Grand Master

Here is a good place to start

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

Make as much of your food gluten-free and the accidental crumbs will be reduced. 

nvsmom Community Regular

Welcome to the board.

 

I agree with Karen, I would switch them to gluten-free foods (over the next few months) as much as possible. Health-wise, there is not a single reason that they should eat gluten - it's mostly a taste and texture preference, but preferences can change.  :)

 

Have you had your children tested for celiac yet?  There is a genetic link so there is a chance that they have it even if they don't have obvious symptoms. You might want to consider testing them before they are eating too gluten-free.

 

And hang in there. The first few months are hard, and the first few weeks are often very difficult because some of us go through a withdrawl and feel even worse for a while.  Keep at it, it will get easier.

Cookingpapa Rookie

The key thing is to look at ingredients on the labels and look for possible gluten content.

 

Besides the obvious wheat and barley in ingredients, look for the words "natural flavors".

 

When my wife discovered she had celiac disease it was difficult to cook because she loved Italian food and I love chinese. After some research I've been able to find good gluten free options for pasta and have also found replacements for all the chinese sauces in my pantry.

tarnalberry Community Regular

When I cook for my husband and daughter, they eat gluten free.  They don't mind; there are lots of very tasty things that are naturally gluten free (and not expensive) that you can make.  We have dinner guests every week and I cook gluten free for them as well.  And I cook gluten free for my inlaws when they stay with us.  And when I take cupcakes to preschool... Yeah, you don't have to cook gluten food for anyone else, and you will likely be healthier if you don't.

shadowicewolf Proficient

The key thing is to look at ingredients on the labels and look for possible gluten content.

 

Besides the obvious wheat and barley in ingredients, look for the words "natural flavors".

 

When my wife discovered she had celiac disease it was difficult to cook because she loved Italian food and I love chinese. After some research I've been able to find good gluten free options for pasta and have also found replacements for all the chinese sauces in my pantry.

I don't think so, not in the US. Wheat cannot be hidden. As such, "natural Flavors" cannot mask it. It is also highly unlikely that barley would be in there either.
Melissa.77 Rookie

Thank you all for support this is a super hard journey for me. I realy love food alot and have always eaten what I wanted to some now Im a bit depressed. Not to mention I have been in severe pain and not able to get of couch most days. So thanks for all the support


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



Celiac.com Sponsor (A8-M):



Melissa.77 Rookie

I have also thought about taking my children in after a few months to get checked out as I have been reading it is genetic. Thanks

bartfull Rising Star

Melissa, I don't think there is a single one of us who didn't go through a period of mourning. I think most of us had meltdowns at the grocery store at first. Trying to adjust, learn, adapt, and overcome, all while you are feeling so lousy is so overwhelming. But I PROMISE it will get easier. After a while you don't even think about it anymore. You just eat what becomes normal and get on with your day. Soon you will be feeling so much better you will remember what it was like to enjoy all the other aspects of life. Hang in there and stick around the forum. There is always someone to answer questions, cheer you up, congratulate you on your victories, and teach you cool recipes too.

Takala Enthusiast

Look, guys, if some of you don't quit with the misinfo on the USDA "natural flavors" loophole, which allows gluten in barley and rye byproducts, and from processed starches and other grain byproducts which may not be gluten free, to be applied or used as flavoring or seasonings,  you are going to inadvertently make somebody sick.   USDA does not care at all about gluten free labeling according to a statement I have read from the current Secretary Vilsack, he says companies following VOLUNTARY food labeling for the top 8 allergens is enough and does not think the USA needs stricter standards.  Never assume. We do not have gluten free labeling standards here at this time, April 2013, in the United States. 

kenlove Rising Star

Look, guys, if some of you don't quit with the misinfo on the USDA "natural flavors" loophole, which allows gluten in barley and rye byproducts, and from processed starches and other grain byproducts which may not be gluten free, to be applied or used as flavoring or seasonings,  you are going to inadvertently make somebody sick.   USDA does not care at all about gluten free labeling according to a statement I have read from the current Secretary Vilsack, he says companies following VOLUNTARY food labeling for the top 8 allergens is enough and does not think the USA needs stricter standards.  Never assume. We do not have gluten free labeling standards here at this time, April 2013, in the United States. 

where's the like button for this? (^_^)

Melissa.77 Rookie

Im sticking aroud here because it has been very helpfull knowing how people cope with all this and to learn more about celiac because I was just diagnosed and told glutin free food only and good luck. Then just sent me on my way

karichelle Newbie

I have been made ill by ingredients hidden under natural flavors...barley malt in an herbal tea. They have to declare wheat but not barley, rye, or oats.

psawyer Proficient
While "natural flavors" can contain gluten, they very rarely actually do. The most likely source would be barley malt, and that is a relatively expensive ingredient, so it is usually explicitly declared as "malt flavor."
 
If there were wheat in it, in the US (and Canada) it would be required by law to be disclosed as just that, "wheat."
 
Open Original Shared Link on flavorings:

It would be rare to find a "natural or artificial flavoring" containing gluten (a) because hydrolyzed wheat protein cannot be hidden under the term "flavor." and (b) barley malt extract is almost always declared as "barley malt extract" or "barley malt flavoring." For this reason, most experts do not restrict natural and artificial flavorings in the gluten-free diet.

 
Gluten-Free Diet - A Comprehensive Resource Guide, published 2008, page 46
 
Note: As of August 2012 Canada requires ALL gluten sources to be explicitly disclosed. Some foods packaged before August 4 may still be in stores.
julissa Explorer

when I realized how serious this all was and went gluten free, so did my kitchen and my family. they want gluten? they can get it out. period. I had 11 people for holiday last week, 100% gluten free Seder, no one noticed, although they all had to know.

 

all they could say was how delish it all was.... modestly speaking of course.

IrishHeart Veteran

While "natural flavors" can contain gluten, they very rarely actually do. The most likely source would be barley malt, and that is a relatively expensive ingredient, so it is usually explicitly declared as "malt flavor."
 
If there were wheat in it, in the US (and Canada) it would be required by law to be disclosed as just that, "wheat."
 
Open Original Shared Link on flavorings:
 
 
Gluten-Free Diet - A Comprehensive Resource Guide, published 2008, page 46
 
Note: As of August 2012 Canada requires ALL gluten sources to be explicitly disclosed. Some foods packaged before August 4 may still be in stores.

 

 

and Tricia Thompson, RD explains it as well:

 

 

Flavorings & Extracts: Are They Gluten Free?

I frequently am asked about the gluten-free status of ingredients, including natural flavor, smoke flavoring, extracts containing alcohol, and caramel.

Natural Flavor

According to the Food and Drug Administration the terms natural flavor, natural flavoring” or flavoring on a food label, means “the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentation products thereof, whose significant function in food is flavoring rather than nutritional.”

In other words, natural flavor, natural flavoring, and flavoring may be derived from gluten-containing grains. BUT unless you see the words wheat, barley, rye, or malt on the label of food product containing natural flavor, the natural flavor probably does not contain protein from these sources.

Why? Under the Food Allergen Labeling and Consumer Protection Act if an ingredient in an FDA-regulated food product contains protein from wheat, the word “wheat” must be included on the food label either in the ingredients list or Contains statement.

Even though natural flavoring is one of those ingredients (along with coloring and spice) that may be listed collectively, wheat protein will not be hidden. Barley is used in flavorings, such as malt flavoring and some smoke flavoring (see below) but these ingredients generally are declared in the ingredients list.

Rye also could be used in a flavoring but probably will be listed as rye flavoring (which is generally made from rye flour) in the ingredients list or used in a food product you wouldn’t eat anyway, such as a bread product. The United States Department of Agriculture (regulates meat products, poultry products, and egg products) does not allow protein containing ingredients to be hidden under the collective ingredient name of natural flavor. Rather, protein containing ingredients must be included in the ingredient list by their common or usual name.

Smoke Flavoring

This flavoring is derived from burning various woods, including hickory and mesquite. Barley malt flour may be used as a carrier for the captured “smoke.” Some manufacturers list the sub-ingredients of the smoke flavoring used in their products; others do not. I recently came across a salsa product that included smoke flavoring. The ingredient list read, “natural smoke flavor” (contains organic malted barley flour). Typically, I don’t consider salsa a likely place to find gluten but this is a good example of why it really is important to always read the ingredients list of any processed food!

Alcohol-Based Extracts

There is no reason to avoid flavoring extracts, such as vanilla extract because they contain alcohol. The alcohol in these products is distilled and pure distilled alcohol is gluten free regardless of the starting material. Remember, during the process of distillation the liquid from fermented grain mash is boiled and the resulting vapor is captured and cooled. This causes the vapor to become liquid again. Because protein doesn’t vaporize there are no proteins in the cooled liquid.

Caramel

According to the Food and Drug Administration, caramel is a color additive made from heating any of the following carbohydrates: dextrose, invert sugar, lactose, malt syrup, molasses, starch hydrolysates and fractions thereof, and sucrose.

In other words, caramel color may be derived from barley or wheat. However, I have never come across any manufacturer information indicating that caramel was derived from malt syrup. In the U.S. caramel is typically made from corn. In Europe it may be made from wheat. BUT caramel color, regardless of what it is made from probably is an ingredient you don’t have to worry about.

Why? According to DD Williamson, the largest manufacturer of caramel color in the U.S., cornstarch hydrolysate is the most likely source of caramel when the ingredient is made in the U.S. In their plants in Europe, DD Williamson uses wheat as their source of caramel.

However, if a food product regulated by the FDA includes caramel containing protein from wheat, wheat must be listed on the food label either in the ingredients list or Contains statement. Nonetheless, even if a food manufacturer in the US uses wheat-derived caramel imported from Europe, the caramel is unlikely to contain much in the way of intact protein. This is a highly processed ingredient.

Copyright © by Tricia Thompson, MS, RD

psawyer Proficient

Look, guys, if some of you don't quit with the misinfo on the USDA "natural flavors" loophole, which allows gluten in barley and rye byproducts, and from processed starches and other grain byproducts which may not be gluten free, to be applied or used as flavoring or seasonings,  you are going to inadvertently make somebody sick.

This allegation lacks foundation. If you have an example, you need to provide:

The exact name of the product with gluten hidden in "natural flavors" (the UPC would be helpful); and

Evidence (proof) that gluten was actually hidden.

Anything less than that it groundless fearmongering.

kenlove Rising Star

Here are a few links which seems to be the basis for some of the confusion.

Open Original Shared Link

 

Which seems to be what other articles are based on

Open Original Shared Link

Open Original Shared Link

 

Open Original Shared Link

psawyer Proficient

Here are a few links which seems to be the basis for some of the confusion.

Open Original Shared Link

 

Which seems to be what other articles are based on

Open Original Shared Link

Open Original Shared Link

 

Open Original Shared Link

The first link is to an article about the definition of "natural flavor" that is more than ten years old. The second is about natural versus artificial flavor. The third is the legal definition of flavor from the USDA.

So, again, can anyone provide an actual, verifiable example of a product where gluten was hidden in flavor, whether natural or artificial?

kenlove Rising Star

The first link is to an article about the definition of "natural flavor" that is more than ten years old. The second is about natural versus artificial flavor. The third is the legal definition of flavor from the USDA.

So, again, can anyone provide an actual, verifiable example of a product where gluten was hidden in flavor, whether natural or artificial?

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

 

is Scotts listing showing it may or may not contain gluten along with:

6) According to 21 C.F.R. S 101,22(a)(3): [t]he terns natural flavor or natural flavoring means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentationproducts thereof. Whose significant function in food is flavoring rather than nutritional.

-----------------------

I think its obvious some have more problems with this than others.  Also some  have more faith in labeling and adherence to laws than many others.  In my job I see almost daily abuse of a wide variety of labeling laws in Hawaii, including USDA organic and country of origin labeling laws. I would always err on the side of caution when it comes to recommendations regarding what new celiacs might ingest. 

ken

Juliebove Rising Star

When my daughter was diagnosed, we went totally gluten-free.  My husband only tolerated this for a while and then he wanted regular pizza and sandwiches.  My solution for this was to buy a little fridge for my daughter's gluten-free foods.  Anything that did not need to be refrigerated was put on our card table.  Not the best solution but it cost so much money for the gluten-free foods, I had to wait until I could afford a shelving unit.  A freestanding pantry would have been even better but...  The shelving unit works.

 

I told my husband that if he wanted stuff that we didn't have in the house to go out and buy it and eat it while he was out.  Eventually I began buying him prepackaged sandwiches or getting him something from Subway and once in a while ordering out for pizza.  Since you are the one with the gluten issues, this might not work for you.  But it is likely that your kids shouldn't be eating gluten either.  I would advise getting them tested as well.

 

If it turns out that they do not have gluten issues, then...  I would still try to keep the house gluten-free.  You can use gluten-free pasta, rice, potatoes, etc.  And people probably won't notice the difference.  My Italian husband never once questioned the gluten-free pasta.

 

I don't know if this is true or not but I was watching Christina Pirello (vegan chef) the other night and she said they have now discovered that it can be harmful for people who do not need to eat gluten-free to eat a gluten-free diet.  Says that it makes some sort of changes in the gut.  But even if I did believe this, I would still make the house as gluten-free as possible and let them get their gluten elsewhere.  I'm sure they might get cookies or crackers or even a sandwich when visiting people.  Perhaps you could buy some sort of individually packaged things that they could open by themselves and eat outside?  Like crackers or Goldfish or something.  Or you could buy a big package of those things and have someone else portion them out in little containers or plastic bags, somewhere other than in your house.  Let them eat those outside.  Never in your house.  Never in your vehicle.  When we lived in one place, we had a covered deck.  I would send my then young daughter out there to eat messy stuff.  I could easily hose down any crumbs or mess.

 

I don't know that I would advise a person without gluten issues to eat gluten-free all of the time.  But I don't think it would hurt at all do eat gluten-free at home.  If your kids get school lunches or if you ever dine out, they can eat gluten there.

IrishHeart Veteran

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

 

is Scotts listing showing it may or may not contain gluten along with:

6) According to 21 C.F.R. S 101,22(a)(3): [t]he terns natural flavor or natural flavoring means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentationproducts thereof. Whose significant function in food is flavoring rather than nutritional.

-----------------------

I think its obvious some have more problems with this than others.  Also some  have more faith in labeling and adherence to laws than many others.  In my job I see almost daily abuse of a wide variety of labeling laws in Hawaii, including USDA organic and country of origin labeling laws. I would always err on the side of caution when it comes to recommendations regarding what new celiacs might ingest. 

ken

 

 

Interestingly enough, I posted this exact same excerpt from Tricia Thompson's site (see my post above) and her conclusion is:  that it is NOT a problem for celiacs.

 

It appears the confusion may lie in what conclusions we celiacs may draw from the information available to us.

:unsure:

And we should add that Scott's posted list has several footnotes, quantifiers and explanations attached to the list for people to read.

Takala Enthusiast

"Tricia Thompson, RD" is not a regulatory authority.  She is not the FDA nor the USDA, of the United States, which have written rules on this topic, which are original source content which can be found online, which do have exploitable loopholes.  The top allergen list for the USA does not contain 2 sources of triticum gluten - barley and rye.   According to research I have done previously, the FDA does not inspect and test every ingredient used in human grade food manufacture coming into this country, either- the importers must self- certify the content.

 

__________

I don't know if this is true or not but I was watching Christina Pirello (vegan chef) the other night and she said they have now discovered that it can be harmful for people who do not need to eat gluten-free to eat a gluten-free diet.  Says that it makes some sort of changes in the gut.

 

The online vegan community has a subset of people who are very, very, very anti gluten-free diet.  They are being encouraged in this by other entities.   I like to remind them that it's likely 1 in 3 vegans have the genes and the potential to be "stricken" with celiac disease,  ;)  and that there are lapsed vegans who have gone gluten free and regained their health, and practicing vegans who were sick until they went seriously, truly gluten free, which is their worst possible nightmare, right after they find out that there are gluten free bakeries.  Vegan, gluten free bakeries.  :blink:  :ph34r:  Spreading the gluten free gospel of World domination, one cupcake at a time. 

 

 

How much would it shock people here that I could point out that there are registered dietitians on the internet who are also on the boards or on the advisory councils of wheat lobby organizations, which are routinely putting out talking points which are designed to be deliberately harmful to the acceptance of the safety of a gluten free diet, without disclosing the source of what paid for said "studies,"  and what were the qualifications and field of study of the person who wrote the study, allegedly showing the "harm" of a gluten free diet ? It is always the same talking points pointing out what they believe to be the superiority of a grain- based diet, the inferiority and harm of a low or no grain diet, the near insistence that adequate fiber and certain vitamins can only be found in a high grain diet, (not true) and it always is nearly word for word the same talking points found on the professional dietitians organization's websites regarding "a healthy diet."  They also, almost comically, note that many celiacs gain weight on a gluten free diet, with a hint of disapproval, saying that this shows the gluten free diet is not healthy, missing the larger reason that hey, maybe they aren't suffering the look of fashionable malnutrition anymore. :rolleyes:   If only we could get it through their heads about the relationship between a high carb diet and insulin resistance and the differences between "normal" people and those who suffer from auto immune diseases.    But these people are just doing what they have been hired to do, even if they believe in it.  The culprits are the various interests competing for agricultural subsidies from government. 

 

It would be better if the food manufacturers of America didn't keep getting offended that we'd like to just know what is really in the package that our tax dollars heavily subsidized to bring to market. 

karichelle Newbie

Torani flavored syrups are one example of a gluten-containing ingredient being part of "natural flavors" and not being otherwise declared. The FAQ page on their website lists the following flavors as containing gluten:

 

Bacon, Classic Caramel, Sugar Free Classic Caramel, Toasted Marshmallow and Sugar Free French Vanilla.

 

Here are the ingredients for the Classic Caramel: Pure cane sugar, water, natural flavors, citric acid, sodium benzoate, potassium sorbate (to preserve freshness). I have one of the SF Classic Caramel and it does not say that it contains wheat or gluten anywhere on the package. But it does, according to their website.

Melissa.77 Rookie

Im curious how long does it take your body to heal after being glutin free. I know that going glutin free is a life long thing but how long before your body starts feeling better. Also wanted to know if others experianced over all down and not feeling like there is much in the world for you to do. Im having a hard time with this and dont have any support at all so its hard.

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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.