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Possibly Glutened - How Long Till You See A Reaction?


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#1 SMDBill

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Posted 01 November 2012 - 01:45 PM

I was CC almost 2 weeks ago and just the last couple days I have really started to feel great. We decided to order gluten-free pizza from Ledo's Pizza locally, which I have safely had before. However, it's NOT prepared in a gluten-free kitchen so I knew I was eating it at my own risk.

Anyway, my stomach, within 30 minutes of eating, began loudly growling. I have never had a rash from gluten, but I did have DH on my feet (arches) before going gluten-free. Once I noticed my stomach growling I was joking about it while scratching my hand pretty briskly between the joints of my index and middle finger where they join the hand. (between the visible tendons on top of the hand). I haven't had a rash/itch like that before so I'm not sure if the growling and rash are related and, in particular, gluten related. It's not even been 45 minutes so I have no clue how long it will take if I was glutened before I feel it physically, aside from the rash if it is related.

If you're experienced and know how your body responds, how long till you feel symptoms of it? This sucks...just recovered from one and possibly another today. I know that means a miserable weekend and next week, and it will also guarantee never another pizza unless I make it. Uggggg.

Thanks everyone.
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#2 GottaSki

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Posted 01 November 2012 - 01:56 PM

So sorry - those first glutenings are tough - heck they are all tough, but the early ones include soooooo many unknowns.

Symptoms are different for everyone. I bloat and get a particular kind of foggy/tired (not to be confused with many other forms of fatigue and brain fog that I often have later in the process) within an hour...usually about 45 minutes followed by days of flu-like symptoms and more.

More fun -- it is common that as time gluten-free increases the sensitivity to gluten increases -- thus the first weeks and months you may not react to small particles or cross contamination, but will as time goes on :( The positive of this is it really does help you to find areas that gluten may be sneaking in - within your gluten-free diet.

The transition just takes time - there will be more frustrations along the way - hang in there - it WILL get better.

Hope this one doesn't hit you as hard as the last.

And homemade gluten-free pizza is really good...I can't eat it right now due to other intolerances, but am making two for my Celiac teen's birthday tonight. I know it's not the same as grabbing it out on the town, but at least it doesn't make him sick.

Feel better soon :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 SMDBill

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Posted 01 November 2012 - 02:05 PM

It's strange. That brain fog is starting to show signs. Or my mind is playing tricks on me because I am fearing going through what I am just recovering from again. There's a small knot where that bump started and it does itch. Feels like a headache coming on and I have had no daily headaches since being gluten-free. Probably just paranoia and not real symptoms but impossible to tell.

Thanks for the encouraging word. I'm so cautious and careful but once in a while I just want pizza or a burger. I do my best to find them where they are claimed gluten-free, but I can't see the kitchens where the products are made so I go on blind trust. Not a safe way to get healthy and I'm learning that I just have to give up foods and places to eat as I get glutened. What a hard way to learn! But I do appreciate the insight. I know it will happen over and over, just didn't want them to be back to back.

Fingers crossed it's a bug bite and a big coincidence with some paranoia in the mix rather than a glutening again.
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#4 ncdave

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Posted 01 November 2012 - 05:15 PM

I think everyone"s differant to reaction time, for me it takes about 20-24 hours before the flu like symptoms hit. Made it really hard to figure out what i had ate wrong until i started keeping a food diary. I have a 5-7 day recovery time and then another week before all the other symptoms go away. I trust no one to make food for me, it"s just not worth it.
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gluten free 12/11
dairy free 2/12
soy free 10/12
corn free 10/12
nightshade free 10/12

#5 GFinDC

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Posted 02 November 2012 - 07:38 AM

Been a while for me, but in the past it has been about 30 minutes until I get stomach gas and start belching some rather odd smelling gas. What's interesting is it always smells the same, and is my "glutened" gas belch.. Not like any other gas I might have. So I know when I have been hit by that gas smell and fast reaction. Recovery has varied from a couple weeks to a month or more.

Hopefully you weren't eating Domino's gluten-free pizza.

https://order.domino...nfreecrust.jsp#

Domino's® pizza made with a Gluten Free Crust is prepared in a common kitchen with the risk of gluten exposure. Therefore, Domino's® DOES NOT recommend this pizza for customers with celiac disease. Customers with gluten sensitivities should exercise judgment in consuming this pizza.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 SMDBill

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Posted 02 November 2012 - 10:39 AM

No, it was from Ledo's pizza, which is also not prepared in a gluten-free kitchen. It was a risk, one I probably won't take again. However, I apparently was not glutened. I'm lactose intolerant but can handle some lactose. However, the pizza cheese exceeded that level and I think my fear was my body reacting to the cheese. Today I'm still fine other than being extremely fatigued without any exertion. My last glutening was horrible so I don't think I was this time, but I was fearing the worst.

I'm starting to feel the paranoia many talk about with having food prepared in different places where we cannot be guaranteed the food is safe for us.
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#7 GottaSki

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Posted 02 November 2012 - 11:45 AM

I'm starting to feel the paranoia many talk about with having food prepared in different places where we cannot be guaranteed the food is safe for us.


I think most of us have gone through this. I know I didn't understand how serious minute amounts of gluten could effect me until I was at least a month or two gluten-free. My husband took a bit longer to understand, but my reactions became much more pronounced as time gluten-free increased.

Another quirk you may encounter is gluten-like symptoms from other foods...these one off reactions are common in a healing digestive system - I know I became extremely frustrated trying to find gluten when ever I had bloating or digestive discomfort - as time went on I could determine when it was gluten by the symptoms and duration of said symptoms - just another fun part of the learning curve - I often think rOlLeR cOaStEr would be better description than curve to describe what we go through.

Hang on...it is a bumpy ride...fortunately you have had major improvement during your early days which does bode well for continued improvement :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 SMDBill

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Posted 02 November 2012 - 01:12 PM

Thank you!!! I was so confident before I got glutened and thought I had a handle on it afterward. Then I got a little freaked thinking it happened again so soon after starting to recover from the last one. I can't really describe the feelings to family because they don't understand what I feel and how it effects me. It's great to have a wonderful forum of folks who live it and understand when doubts set in.
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#9 GFinDC

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Posted 02 November 2012 - 04:24 PM

Hi Bill,

Glad it wasn't Domino's. Nothing against them but it is not a good bet for celiacs per their own statements. There was quite an uproar about Domino's gluten-free pizza advertising earlier this year

I steer clear of dairy because of casein. Casein is one of the proteins in cow dairy. Soem of us react to casein as well as lactose (dairy sugar). If it is a lactose problem you can take lactaid pills when you eat the diary to help digest the lactase sugar. For casein there is no real good aid. Most hard cheeses are very low on lactase, but high in casein. But for a pizza it is kind f hard to tell what amount of lactase is in it without asking the restraunt what the cheese was. Some soft cheeses could have a considerable amount of lactase in them. Anyway, that is one way to test your reactions. Eat a hard cheese like cheddar and see if you react. If you do itis probably a casein problem. Of course what Lisa said is also true. Reactions and symptoms can be kind of unpredictable at the beginning of the gluten-free diet. So something that bothers you now might be fine later on.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul


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