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

So Frustrated With Getting Glutened.

arkoflove

By arkoflove
in Coping with Celiac Disease

Recommended Posts

arkoflove Apprentice
arkoflove
Posted

Well, I've posted about chocolate chips on here and about Mexican food. =) Here I am with yet another question...

I got glutened (I'm assuming, unless I have another food intolerance to ferret out, working on that too...) with Mexican food about a week and a half after going off gluten. I recovered in about 2.5-3 days. This weekend I was either glutened with cc or suffering from another food intolerance. I ate (over a period of 3 days) gluten-free oatmeal cookies, gluten-free Bobs Red Mill Cornbread, and gluten-free Bobs Red Mill Chocolate brownies. (I was so happy to have gluten-free baked goods again, lol. Next time I approch things one item at a time.)

I ended up with C, bloated prego belly (really bad), and I think some fatigue. I am still 'coming down' off my reaction to whatever it was. I am still waking up with a bloated belly, and having bathroom c issues. When glutened I immediately go up in weight, and this time in 3 days I was 10lbs heavier. I've lost 5 of the 'glutened' lbs, and have 5 to go. I know that it's not fat, but must be water retention and c...It's all in my belly. I'm so frustrated with this situation!

I wash my hands before touching my food or putting anything in my mouth or doing any gluten-free baking. My pans and dishes that I used were all glass and had been washed. My counters were clean when I baked.

Respones here (on my other questions) have led me to believe that Bobs Red Mill can be cc'd often? Is this generally ture?

Also, is it worse every time you are glutened?? And does it take longer to clear up each time? I know that you all have said you react to smaller and smaller amounts of gluten.

I feel nervous now to try to eat anything new. I am back on my diet of very basic foods. I handle canned beans, protein shakes, meat, veggies, almond butter coffee, and tea well. Also have milk in my tea and coffee. And have eaten small amounts of fruit. I admit to throwing in Diet Coke with Splenda, cause sometimes you can only take so much! A common ingredient in my gluten-free mixes I ate each of my 'reaction' days was cornmeal in the bobs mixes. Also chocolate chips, but nowhere on the bag does it say there are any wheat ingredients. So now I am waiting to completely clear up my last glutnening (which is taking a week at least- way longer than the other times) and going to have to try some corn.

If it IS cc from Bobs Red Mill, where do I get flour from and how do I find trustworthy sources? I'm going to just try almond flour for baking after finding the Gluten Free Almond Flour cookbook. Seems easier, and I am facing a blood sugar issue.

All advice and thoughts are appreciated! Thank you for all your responses on my other topics. I know I am echoing some of the same in this post, and appreciate your patience.

-Megan

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

Celiac.com Sponsor (A8-M):


wschmucks Contributor
wschmucks
Posted

Hi Megan,

So frustrating I know. I have heard that Bobs RedMill DOES have alot of CC issues. To be honest the only releif I got was by going on the SCDiet. I know its super restrictive and hard so maybe not everyone can do it. I had to go back to basics for A LONG TIME before I found a steady baseline. My symptoms were exactly like yours Id gain like 10 pounds over night and get serious constipation (im glad im not alone...thought I was). The biggest things for me have been: no resturant eating (EVER), no grains, no sugar, no soy. If you dont want to go on the SCD I would at least make the switch to almond flour and not use the rice, potato flour-- it would also help with the blood sugar and I didnt put on any weight from the added nut caloriess (actually the opposite, Ive lost 5). Take care of yourself an be patient.

tarnalberry Community Regular
tarnalberry
Posted

you may be one of the 10% of celiacs who reacts to oats? (assuming you used certified gluten free oats in the cookies, not something like quaker, in which case, I'd bet money on contaminated oats)

arkoflove Apprentice
arkoflove
Posted
  • Author
Hi Megan,

So frustrating I know. I have heard that Bobs RedMill DOES have alot of CC issues. To be honest the only releif I got was by going on the SCDiet. I know its super restrictive and hard so maybe not everyone can do it. I had to go back to basics for A LONG TIME before I found a steady baseline. My symptoms were exactly like yours Id gain like 10 pounds over night and get serious constipation (im glad im not alone...thought I was). The biggest things for me have been: no resturant eating (EVER), no grains, no sugar, no soy. If you dont want to go on the SCD I would at least make the switch to almond flour and not use the rice, potato flour-- it would also help with the blood sugar and I didnt put on any weight from the added nut caloriess (actually the opposite, Ive lost 5). Take care of yourself an be patient.

Wow, thanks for your reply! I tried to message you but it wouldn't work. How long did it take you to come down from your symptoms? Any advice for what to use to relieve constipation? It is so frustrating to gain weight overnight like that...

arkoflove Apprentice
arkoflove
Posted
  • Author
you may be one of the 10% of celiacs who reacts to oats? (assuming you used certified gluten free oats in the cookies, not something like quaker, in which case, I'd bet money on contaminated oats)

They were certified, but Bobs red mill. I'm wondering if its oats and corn? Does diet soda have corn by products in it?

Roda Rising Star
Roda
Posted
They were certified, but Bobs red mill. I'm wondering if its oats and corn? Does diet soda have corn by products in it?

I reacted badly to Bobs Red Mill gluten free oats after not having any oats for 7 months. I have eaten other Bobs prodcucts without any problem. Within 30 minutes the stomach bloating with sour burps started. Abdomen distended and remained that way for several days and constipation set in. Had horrible gas pains that I laid in a fetal position to help relieve the discomfort. About a week later I developed a bad painful red rash on my back side. So for me even gluten free oats are a no no. Soda bothers me it causes my stomach to bloat. Also alot of diet soda has artificial sweetners in it that can be problematic for alot of people. On the occasion I have a soda I don't do diet.

Aroostook Newbie
Aroostook
Posted

I've been eating Bob's Red Mill products for some time now and have never had a problem. I would venture a guess you have an issue with oats. Try a bowl of oatmeal, you'll get your answer. Personally I love Bob's Red Mill All-purpose gluten-free Baking Flour. I use it for everything I bake and have had fantastic results. Add my xanthum gum (1 tsp per C flour in regular baked goods, 2 tsp per C flour and 1 Tbs potato flour in my bread). Good luck! :D

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
They were certified, but Bobs red mill. I'm wondering if its oats and corn? Does diet soda have corn by products in it?

I am going to through in one more possibility here. I have reacted very badly to BRM's cornbread mix and also to Enjoy life cookies (those are made in a dedicated plant so little risk of CC with them). For me the issue may not have been a CC reaction but a reaction to sorgum (sp?) flour. In my case this was borne out by bad effects from other products with that flour in it. It may not be the cause for you but you might want to also check the brownies and see if that flour was in those also. It is not uncommon for us to have reactions to flours that we have not eaten before.

dilettantesteph Collaborator
dilettantesteph
Posted

Some celiacs react to things that other celiacs tolerate well. It might be best to go on a totally safe diet of fruits, vegetables and meats and then add those gluten free things in one at a time to see what you react to.

lovegrov Collaborator
lovegrov
Posted

BRM products that are marked as gluten-free are made in a dedicated facility and are made with ingredients that supposed to be gluten-free. Thats essentially what BRM is guaranteeing. However, unless you control the growing and manufacturing of every single ingredient, NO manufacturer can 100 percent guarantee gluten-free.

richard

ranger Enthusiast
ranger
Posted

I'm pretty sensitive but use BRM with no problem. My money is on oatmeal as your problem - my reation to one of my all-time faves, oatmeal cookies, was as bad as gluten before. I went gluten free. I've been gluten free for 8 months and still have not tried oat. About eating out. I have a couple of restaurants that I trust but I wouldn't step foot in a mexican restaurant. Too much cc. I don't even eat gluten free food that my family makes- get cc'd everytime, now I bring everything I eat. Thier kitchens are just to full of gluten. People without celiac have no idea what lengths we have to go through to keep our food safe.

Gemini Experienced
Gemini
Posted
They were certified, but Bobs red mill. I'm wondering if its oats and corn? Does diet soda have corn by products in it?

Are you used to getting much fiber in your diet? Sometimes people just have a reaction because they are not used to fiber and oats are a powerhouse of fiber.

That alone could cause your symptoms. Also, going heavy on all those baked goods might cause what you described. Not because of CC but gluten-free baked goods are high calorie, high fat and all that fat content might not be good if you are just starting the diet and need to heal. To this day, I still cannot eat really fatty foods because I cannot digest all that fat. I have to eat those foods sparingly.

ravenwoodglass Mentor
ravenwoodglass
Posted
BRM products that are marked as gluten-free are made in a dedicated facility and are made with ingredients that supposed to be gluten-free. Thats essentially what BRM is guaranteeing. However, unless you control the growing and manufacturing of every single ingredient, NO manufacturer can 100 percent guarantee gluten-free.

richard

Thank you for pointing out that they use a dedicated facilty. That can be a very helpful bit of information when trying to figure out whether we were glutened or whether we may be intolerant to a seperate ingredient in the product.

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. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    2. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    3. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
    4. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      12

      New Celiac Mama in My 30s

      @tiffanygosci, Hello. I apologize for your thread being hijacked. I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain. My cycle returned early after I had my...
    5. trents
      - trents replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to 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.