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

Diet Is Too Easy - Am I Doing Something Wrong?


mattj

Recommended Posts

mattj Rookie

I have been gluten-free for around three months now. I don't think I've seen any improvement yet, so I can't help but wonder if I'm still consuming gluten. These thoughts are compounded by the fact that I'm finding it very easy to be gluten free.

When I first started researching it seemed like everybody was having a hard time with the diet, but I've only really made a few basic changes and it has not been difficult to achieve.

I am extremely diligent when it comes to checking labels, but perhaps some stealth gluten is getting by. Can someone give me a list of some of the most common hidden gluten ingredients? Should I begin to think about throwing out some of my cooking utensils? I find it hard to believe that contamination can occur from a strainer or a spoon which has been washed so many times since it last touched gluten. Do I need to worry about cutlery which other people use?


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



Celiac.com Sponsor (A8-M):



mattj Rookie

An example of the kind of thing I notice: I got some rice cakes with a chocolate and caramel favour. I checked the label and it said suitable for celiacs, but the ingredients list glucose syrup (from wheat). I have no idea if I can eat this or not, but I always go for safety first.

If wheat-derived glucose syrup is harmful, perhaps it is getting into my system from another product which hasn't labelled the ingredient as wheat-derived. But I was told that in the UK they must label it.

I have been eating products with maltodextrin, as a search of these forums and elsewhere told me that it is safe.

Emily Elizabeth Enthusiast

After three months I would think you should be feeling better. It depends on how badly your intestines were damaged though. If they weren't that severe, you are probably still consuming gluten. I found that items that said gluten free actually were making me sick due to contamination. I was eating Puffins cereal (honey rice), which I later found out had a recall in many countries recently due to large amounts of gluten found in the product. My best advice would be to not eat a lot of processed gluten free items (pasta, cereals, etc). Wal-Mart is the best for finding things that are absolutely gluten free since they list it right on their great value brand after the ingredients. I buy their rice, canned veggies and fruits and such. The more meat, veggies and fruits you have the better until you start feeling better. It could also be something like your utensils or even your makeup (that happened to me as well). I don't believe that something could still contain gluten after being washes so many times either, but at the same time, when I wasn't feeling well, I went ahead and replaced anything that was plastic with scratches and just threw away my wooden spoons. I wish you the best and hope you start feeling better soon!

Emily

An example of the kind of thing I notice: I got some rice cakes with a chocolate and caramel favour. I checked the label and it said suitable for celiacs, but the ingredients list glucose syrup (from wheat). I have no idea if I can eat this or not, but I always go for safety first.

If wheat-derived glucose syrup is harmful, perhaps it is getting into my system from another product which hasn't labelled the ingredient as wheat-derived. But I was told that in the UK they must label it.

I have been eating products with maltodextrin, as a search of these forums and elsewhere told me that it is safe.

Luisa2552 Apprentice

If you are in the UK, from what I have read, labeling laws are much better there. I agree with the previous poster- I stick to whole foods as much as possible (I am still healing) and try to stay away from processed food. The biggest ingredient I am leary of is 'spices'. Ground spices can have gluten in them and if a pasta sauce or the like lists 'spices' I don't buy the product unless it is specifically labeled gluten free. Artificial flavorings have always given me the creeps so I steer clear of those too. There is a list of non-safe ingredients on this web site that's a great place to start.

I think I have tougher standards than I need too. I'm just so afraid of getting glutened. As far as processed foods, if there are ANY questionable ingredients and it's not labeled gluten-free or on a store list of gluten-free products, I don't buy it.

Also, if you are still not feeling well, try cutting out dairy, at least temporarily.

mattj Rookie

I did feel a bit unwell after eating some gluten free cornflakes the other day. This was my first time eating a gluten free cereal.

I have been eating a lot of gluten-free pasta, since pasta was a large part of my diet before diagnosis. I am also eating a lot of meat, usually with veg. A huge plate of pasta (250g dried) is my dinner at least 4 times per week.

Is there anything more than a hunch that 'spices' could be a problem? So many food items I buy have these type of things in them but I have been relying on the labelling rules telling me if anything is derived from gluten ingredients.

I had actually been ignoring the gluten free foods directory because finding food that is logically gluten-free and gluten-free according to the lack of gluten in the ingredients seemed so simple. I feel I should make a distinction between gluten-free because the label says gluten-free and gluten-free because of an educated reading of the ingredients. Most of the food I buy according to the latter.

aikiducky Apprentice

Mattj, if you are in the UK, labels DON'T have to say what maltodextrin or glucose syrup has been derived of. All other ingredients, like natural flavours or spices, you can trust to be gluten free unless the labels says otherwise, but maltodextrin or glucose syrup can be from wheat.

THE ABOVE APPLIES TO EUROPE ONLY PEOPLE, don't get confused. :D

Did you eat the corn flakes with milk? Have you tried cutting our dairy for while, this is something a lot of celiacs have a hard time digesting, sat least in the beginning of the diet?

Pauliina

"Suitable for celiacs" is a phrase I consider a bad sign since it often means there's gluten under the codex norm in a product. Those are not suitable for me!

gfpaperdoll Rookie

Only in the USA is maltodextrin safe in foods that are MADE in the USA. For medicines in the USA you have to check the source of the maltodextrin.

I have not been to Europe since I have been gluten-free, but it is my understanding that there is a high percentage of gluten allowed in a food that is stated to be "safe for celiacs"

my advice would be the same as I advise all new celiacs, do not eat manufactured foods. eating gluten-free pasta several times a week is way too much. I would suggest once a month or none. Try some spaghetti squash or rice instead.


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



Celiac.com Sponsor (A8-M):



mattj Rookie

Spaghetti squash?

I thought that maltodextrin was safe no matter what. In my celiac literature it is given a pass. It says:

"Maltodextrin, a common ingredient, even if made from wheat is gluten free with undetectable levels of gluten remaining. Although it is called maltodextrin it does not contain malt."

I must say I am confused by the notion that I should cut down on gluten-free pasta. If it contains no gluten (it's made from maize) then is the problem something other than gluten ingestion?

aikiducky Apprentice

Medical consensus in Europe is that maltodextrin and glucose syrup made from wheat are safe for most celiacs. There are however people who react to them, I'm one of them. :( The only ways to find out that I know of is to cut them out completely for a while and see if anything improves, or have follow up biopsies to see that your intestine is healing. I get exactly the same symptoms from glucose syrup or maltodextrin as I would from bigger amounts of gluten, so if I would continue to consume them, I'd always feel ill.

The manufacturing process is wheat starch -> maltodextrin -> glucose syrup, so glucose syrup is theoretically even safer than maltodextrin made from wheat.

Are you eating products with "gluten free" under-the-codex-norm wheat starch?

I think the suggestion to cut out pasta might be because some people find they have a hard time with all grains initially, but I'll let the poster who suggested that reply to you themselves. :)

How about the idea to try without dairy for a while, it's not at all uncommon for newly diagnosed celiacs to be lactose-intolerant?

And finally, it IS possible that you are doing well enough on the diet and that it just simply will take more time to heal before you notice any difference. Some people only start to notice a difference after six months or so.

I have never seen a spaghetti squash. :)

Pauliina

hathor Contributor

I see spaghetti squash regularly even in the regular grocery store. Maybe things vary depending on where you live. The peak season is coming up.

Here is a description: Open Original Shared Link

mattj Rookie
Are you eating products with "gluten free" under-the-codex-norm wheat starch?

Pauliina

I have avoided anything like that having read that some celiacs can't handle it. I felt it best to see if I can become healed and then introduce things like that gradually.

I did initially cut out dairy but it became too difficult. I eat 3-6 cans of rice pudding per day and I don't know what I'd eat instead.

Do I need to worry about dry products that contain dry milk in the ingredients?

aikiducky Apprentice

I think it might be worth the trouble to avoid all dairy even just for a couple weeks to see if it helps. So yes even things like dry products with milk ingredients. Then if you start to feel better you can eat some again and see what happens.

I sometimes cook rice (or nuke some microwaveable rice) and mix in some coconut cream and a banana. Yum. I also eat a lot of stir fry veggies and meat, and for lunch quite often a salad (from a bag) with tuna. Another quick lunch is microwave rice with tuna. I also eat gluten free cornflakes with coconut milk and apple sauce...but rice milk seems to work for other people, too. Just check the rice milk is gluten free, all aren't.

Pauliina

Emily Elizabeth Enthusiast

Thye have spaghetti squash at my local Safeway too. They are really good! I cooked up meatballs in a pasta sauce and put it all over spaghetti squash when I had company over and no one even missed hte pasta. They loved it! It's great for weight loss too. Very healthy and less calories than pasta. I definitely recommend it as well!

I see spaghetti squash regularly even in the regular grocery store. Maybe things vary depending on where you live. The peak season is coming up.

Here is a description: Open Original Shared Link

Guest thatchickali

I'm at 2 months and feel worse right now than before I went gluten-free. But a friend of the family who has it took a whole year to get better. I don't know whether I should try more elimination diets for other things or just wait it out on gluten free. Then I don't know how to decide when to give up on just gluten free and do the elimination diets. I consumed gluten on a daily basis for 19 years. I was a really picky eater and looooved carbs like breads. Anything made with wheat I loved it, so I can imagine it would take a long time to heal the damage.

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. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,415
    • Most Online (within 30 mins)
      7,748

    KittyKatJill
    Newest Member
    KittyKatJill
    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

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.