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

Frustrated At The New gluten-free Diet Rollercoaster


Aerin328

Recommended Posts

Aerin328 Apprentice

Felt great all this past weekend (for the first time really since going gluten-free 7/6!), so wonderful that Sunday night I decided to celebrate by making some gluten-free peanut butter cookies (from scratch) and drinking 1 glass of milk. Immediately after eating the cookies and milk my stomach felt like it was under attack, all grumbly and nasty and unhappy and such. I’ve never had a problem with drinking milk before: but as this is the first time I’ve tried it since being diagnosed celiac 7/6, so at first I attributed the reaction to a newly acquired lactose intolerance. (My poor damaged villi. L ) Since Sunday, however, I’ve felt even worse each day… mostly crazy brain fog, fatigue, malaise, and even today emotional swings (I’m usually a very calm and collect person). I’ve been eating the COOKIES every day too… so I’m wondering if maybe somehow they’re what’s making me sick.

Their ingredients were:

· JIF Peanut Butter (gluten-free as per company response to my inquiry)

· Domino white sugar and brown sugar

· Egg

· Rice Flour <- (brandless foreign made in India, purchased at health food store bin)

· Wegman’s brand honey

Does anyone else see any potential for gluten contamination?

Or is it possible I’m still reacting to the milk 3 days later?

This roller-coaster of feeling better then crashing way down again has really got me discouraged. I want to root out everything that could be glutenous or harmful to my poor intestines, but it’s so hard when it seems like even great home-made gluten-free inert food is still causing me to be ill. Anyone have any thoughts?


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



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular
Felt great all this past weekend (for the first time really since going gluten-free 7/6!), so wonderful that Sunday night I decided to celebrate by making some gluten-free peanut butter cookies (from scratch) and drinking 1 glass of milk. Immediately after eating the cookies and milk my stomach felt like it was under attack, all grumbly and nasty and unhappy and such. I’ve never had a problem with drinking milk before: but as this is the first time I’ve tried it since being diagnosed celiac 7/6, so at first I attributed the reaction to a newly acquired lactose intolerance. (My poor damaged villi. L ) Since Sunday, however, I’ve felt even worse each day… mostly crazy brain fog, fatigue, malaise, and even today emotional swings (I’m usually a very calm and collect person). I’ve been eating the COOKIES every day too… so I’m wondering if maybe somehow they’re what’s making me sick.

Their ingredients were:

· JIF Peanut Butter (gluten-free as per company response to my inquiry)

· Domino white sugar and brown sugar

· Egg

· Rice Flour <- (brandless foreign made in India, purchased at health food store bin)

· Wegman’s brand honey

Does anyone else see any potential for gluten contamination?

Or is it possible I’m still reacting to the milk 3 days later?

This roller-coaster of feeling better then crashing way down again has really got me discouraged. I want to root out everything that could be glutenous or harmful to my poor intestines, but it’s so hard when it seems like even great home-made gluten-free inert food is still causing me to be ill. Anyone have any thoughts?

One ingredient jumps out at me for a couple of reasons. The rice flour. 1st reason being that it came from a bin. Bins are notorious for contamination. 2nd reason being, I have gotten sick from rice flour from a ethnic store before. I'm almost 100% positive it was CC in their processing somehow. Anyways.......I would put the blame onto the flour due to contamination either from the bin or from the processing.

Hope you feel better fast!

-Jessica :rolleyes:

Ursa Major Collaborator

Several things come to mind:

1) Yes, you could still be reacting to the milk three days later. In fact, you could be potentially reacting to it for up to two weeks.

2) The rice flour from the health food store was contaminated via glutenous flour getting in by various possible sources. Where is the bin located, is there anything containing gluten nearby?

3) You have other intolerances, for instance to other, non-gluten grains, like rice (rice anything will cause me to have almost the same symptoms as gluten flours). Or eggs? Check my link on lectins to see if there is a possibility that you're intolerant to lectins.

I hope you figure it out, and feel better soon.

Nantzie Collaborator

Yea, I'd be most suspicious of the bin. Before I knew better, I'd sometimes use the same scoop for a couple different things when I bought bin stuff. :ph34r: Now, I never by anything in bins because I know I couldn't be the only one who has done that.

Milk could be it too.

Hope you feel better.

Nancy

queenofhearts Explorer

Well, a glass of milk would make me briefly ill, even though I can tolerate other dairy... just seems to be something about milk per se.

But I agree that flour from bins is VERY risky. I see other shoppers using one scoop to dip several flours... flour spilling from an upper bin into a lower, &c. The only kind of bin I feel relatively safe with is the dispensing kind where you hold the bag up to it... & even then I'm a little uneasy, because I don't fully trust the store employees to avoid cc.

I buy my white rice flour at an Asian grocery (in a bag) & it is very inexpensive, a much better deal than the health food store. They also carry tapioca & potato starch at a very low cost, & a whole spectrum of bean flours. Brown rice flour I order from Authentic Foods-- even though it costs a fortune, it's VERY good!

Hope you recover soon. You'll get the hang of it soon & know what you can tolerate.

By the way, I made peanut butter cookies last night, & my whole family loved them... I hope you can enjoy them again too once you pin down the culprit.

Leah

Lisa Mentor

Hope that you feel better soon.

One thought...anyone else dipping into the peanut butter? (I put a green dot on mine, that reminds other family members not to "double dip")

queenofhearts Explorer
Hope that you feel better soon.

One thought...anyone else dipping into the peanut butter? (I put a green dot on mine, that reminds other family members not to "double dip")

Oh, GOOD thought-- I have to keep a separate container of PB because the rest of the gang double dip without thinking. (Even though I put a big label on the lid that begged them not too, it seemed spreading PB was just too much "autopilot" to keep from cc.) I have my own mayo, too, & we share a mustard dispenser that has a squirt top. Jam we serve with a spoon.

Leah


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

If you have a casein intolerance to the milk rather than a lactose intolerance, the symptoms are pretty identical to gluten. I tried to not give up casein even though Enterolab's test showed I was sensitive to it, I thought I kept getting mystery glutenings like yours, but it always ended up being after dairy. Now I'm finding soy to be a problem, too. I've been gluten-free for 7 months now and I'm pretty sick of the ups and downs of it, too! Especially with these other intolerances showing up now. You caught me on a sick day :huh:

Aerin328 Apprentice

OK after reviewing this with my loving gluten-intolerant girlfriend who actually bought this rice flour for me, I guess it did NOT come from a bin afterall. The brand was "Joy Foods" brand, from India. Anyone have any opinions of this brand?

Also, I've seen several posts warning about granular processed sugar... could the sugar cause this much harassment? (This also is the first time I've consumed any significant amount of processed sugar)

Finally, Casein is something I hadn't considered before... tomorrow I'm going to the Upper GI specialist, not sure what he's going to say, but I will probably end up getting Enterolab testing. Meanwhile I will stay away from milk in case it is the casein... ugh, it's like a food witch-hunt!

CarlaB Enthusiast

Be careful, non-dairy stuff typically has casein in it! I don't really understand how it's considered non-dairy when the ingredients then say contains milk!

Good luck with your GI appt.!

KerriAnne Rookie

As a peanut butter-loving celiac, I have noticed that I often have a bad response to regular pb, but not to natural pb. It could be the hydrogenated oils as that's the main difference between regular and natural. The hydrogenated oils are what keep you from seeing the natural oil separation in regular pb, but you do see the oil floating on the top of natural pb (you just have to stir it in).

Just another suggestion.

Good luck!

DingoGirl Enthusiast
As a peanut butter-loving celiac, I have noticed that I often have a bad response to regular pb, but not to natural pb. It could be the hydrogenated oils as that's the main difference between regular and natural. The hydrogenated oils are what keep you from seeing the natural oil separation in regular pb, but you do see the oil floating on the top of natural pb (you just have to stir it in).

Just another suggestion.

Good luck!

This is exactly what I was going to say. I didn't buy JIF the other day (my forner favorite! :( ) because there were too many ingredients in it, and the hydrogenated oils. I once read that the PROCESS of hydrogenating oils can actually involve gluten - - but, the hydrogenated oils are just so unhealthy anyway, that I now avoid them and pretty much all processed foods - - they no longer agree with me, which is a blessing, really, since my diet is now mostly very pure.

And defininitely try another flour - Trader JOe's has a good rice flour, or go to a health good store, and AVOID the bins if that's an option (I think we've drilled that into you!). Make the cookies again with natural, pure PB and another rice flour and see what happens.

I had to cut out dairy for the first few months of being gluten-free and now am able to tolerate it. But, the dairy reaction was usually huge bloat and was gone the next day....everyone is different, though.

Good luck!

tarnalberry Community Regular

My dairy reactions (casein) last at least a day or two, so that's one though. Cross contamination in the kitchen is another.

zip2play Apprentice

Try making the peanutbutter cookies without flour. THey are GREAT! Even my gluten-free friends LOVE THEM!

Flourless cookies:

1 cup peanutbutter

1 cup brown suger (not packed)

1 egg

1 tsp baking soda

1 cup chocolate chips

Mix together and bake at 350degrees for 12 minutes. YUMMY STUFF!

loraleena Contributor

Some rice flours could be contaminated if made at a plant that also makes wheat flour. Also the bin could be contaminated. Buy rice flour from a company that only makes gluten free products.

jenvan Collaborator

Several possibilites, but the bin looks most suspicious (flour). I don't buy any foods from bulk bins due to CC.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,989
    • Most Online (within 30 mins)
      7,748

    CharlotteCaroline
    Newest Member
    CharlotteCaroline
    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

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.