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

Crap! I Was Gluttened....

pain*in*my*gut

Recommended Posts

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

So I have been gluten free for 2 weeks, and in those 2 weeks I have been very careful with what I eat. I have not eaten out once, for fear of cc. I have had an AWESOME response to the diet!! No gas, cramps, bloating...it's like I had a stomach transplant!!! :D

So, today I got brave and went to Whole Foods and decided to try something different from their prepared foods deli area. I got a quinoa sweet potato patty with wild rice. I asked the lady behind the counter if it was gluten free, and she said yes, but they cannot guarantee anything because they have no designated gluten-free prep area. Annoying, because I thought they were all about alternative eating (vegan, dairy-free, etc.) and since they carry a lot of gluten-free stuff they should be aware of Celiac, right? Not so much...

It's been about 4 hours since I ate the patty (it was gross, BTW), and I have horrible smelly painful gas and nausea. My vision is extremely blurry tonight as well, which was a symptom that had gone away with the gluten-free diet. So, I guess it either had gluten in it and it wasn't listed, or it's cc. Either way, I am screwed. :(

I guess you really don't know how sensitive you are to cc until you experiment, right? For the record, my biposy was normal (my blood work was NOT normal), so I guess I don't "officially" have Celiac disease in my ignorant GI's opinion, but gluten makes me pretty darn sick!!

Ugghh...this stinks.....literally..... :blink:

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

Celiac.com Sponsor (A8-M):


rosetapper23 Explorer
rosetapper23
Posted

Oh....I've been there and done that. I'm so sorry you found out firsthand how dangerous prepared foods can be. I got cc'd on Sunday when I wanted to treat myself to something special--I bought some ginger snap cookies from Trader Joe's. They're supposed to be gluten free (at least, that's what the package says), but I was sicker than a dog on Monday....though I still had to go to work. I really do try to stay away from any processed foods because it's just not worth the risk of getting cc'd.

Hopefully, you'll feel better soon....

AVR1962 Collaborator
AVR1962
Posted

It takes awhile to figure out. I went to eating no boxed foods, no frozen entres, no fast food and no canned foods. Went I ate out it was salads, and still mostly is. Read every label. Amazingly I found wheat flour listed in my cookiung spray, in one of my favorite churizo sausage, in marinades, some ice cream and candy. Once your diet it tight and still get to feel bad and know it could not have been gluten then you have to figure what else could be giving you issues. I cannot eat high fructose, effects me like glutens.....it's in BBQ sauce, ketchup, candy, some drinks. One of my daughters cannot tolerate soy which in alot including mayo.

I have tried some of the gluten free products you can buy off the shelf like bread and cookies, and there is just something about them that does not set well with my stomach. It is not a gluten reaction, just like a yuck in my stomach so I don't eat them. I have done well with the mixes that are gluten-free and the pastas....I think it is alot of trial and error til you get it figured out.

dilettantesteph Collaborator
dilettantesteph
Posted

I guess you really don't know how sensitive you are to cc until you experiment, right?

So true. I still keep finding out.

I hope you feel better soon. As time goes on you do heal more quickly.

MaryJones2 Enthusiast
MaryJones2
Posted

I don't trust anything prepared from Whole Foods. I'm always surprised how unaware they are of gluten-free in that dept as they label everything vegan, etc.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm so sorry they got ya! :(

I don't feel safe eating anything I haven't made myself.

It seems when you first go gluten-free you aren't as reactive to cc because your system is tired from fighting the gluten you were getting on a regular basis. As time goes on those immune "soldiers" are rested up and even a small trace will have them up and fighting it in full force.

All you can really do is use this as a learning experience and go from there. It really stinks that you're trying to be so careful and you can't trust those in the food business to be aware and careful of cc! :o

Skylark Collaborator
Skylark
Posted

I don't know about your Whole Foods, but at mine employees are very specific that their prepared gluten-free foods are not safe for people with celiac disease. I don't see the point of gluten-free pizza, sandwiches, and salads if they're not celiac-safe but I guess there are enough people who are "gluten lite" that it helps their business.

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

I don't trust anything prepared from Whole Foods. I'm always surprised how unaware they are of gluten-free in that dept as they label everything vegan, etc.

I think it really depends on the store and the education level of the employee's. The 2 Whole Foods I frequent are phenomenal about cc in their prepared foods section even though they have the same CYA statement on their prepared foods. They would have to as it's not a dedicated facility. The stores I go to have employees that work those sections that have more food issues than I do so I trust their judgment when I ask the appropriate questions and I have never been glutened by anything I have eaten there.....in 6 years. I am extremely sensitive also and don't usually buy from shared facilities. I also use common sense when making purchases and wouldn't eat something that has been placed too close to the wheat stuff. I live in an area of the country which has really high awareness so that helps make a difference.

gigifree Rookie
gigifree
Posted

Whole foods is horrible! When I first went gluten-free-free (though not carefully) to see if I have a gluten intolerance, I would get prepared chicken and salads there. I never got better.

To make things worse, I went in looking for a multi-vitamine with iron that was gluten-free and the girl gave me a supplement that had gluten in it. Of course, I got nauseous, threw up and got sicker. Stay away from whole foods. Trader Joe's and henry's, I have has better luck with.

  • 1 month later...
norcal-gf Newbie
norcal-gf
Posted

I got "Gluttened" at Costco recently. They were giving out samples of Apple/Raspberry Juice that was suppose to only contain those ingredients. But hours later after drinking the juice I had a horrible stomach pain and the usual bathroom problems that followed. When I looked at the ingredients on the label they added "natural flavoring" which now I know to stay away from! No more samples of anything at grocery or supermarkets or Costco for me.

mushroom Proficient
mushroom
Posted

Hopefully, you can still sample the wine :D

Archived

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

Go to topic listing

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,290
    • Most Online (within 30 mins)
      7,748
    Joycemarie
    Newest Member
    Joycemarie
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.