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Reactions To Gluten? Help!


reijnen

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reijnen Newbie

I am 24 years old and was diagnosed 5 weeks ago with Celiac disease, I am a professional cyclist and doing my job requires me to be 110% healthy. My problems first started with a distended belly, cramps, diarrhea, swollen glands and sever fatigue. I felt amazing one day and boom the next it was game over, I could hardly get out of bed (it felt like mono). After extensive testing both in America and Italy the doctors couldn't come up with anything (I was tested for Celiac but the blood test was negative). In the mean time my G.I. symptoms quickly subsided and all I was left with was fatigue more or less. After returning to the states I had an endoscopy done by a G.I. specialist in Denver. He said everything looked healthy and great but the biopsy came back a week later


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Strawberry-Jam Enthusiast

Some people do have delayed reactions like that. Perhaps uncommon, but not unheard of.

If I were you, I would go on a total elimination diet at this point. This is interfering with your functioning. Help your belly heal by only feeding it what you're sure won't upset it. Then if you improve drastically you'll know it's food. If you don't after a month or two then maybe it isn't food...

dilettantesteph Collaborator

I would go on a diet of whole foods. That means produce and meat. Avoid all packaged items. My reactions are delayed too. Initially I couldn't notice a reaction until the next day. Over time I have gotten better at noticing things and I can tell within a few hours now. Keep a food/symptom diary so that you can figure this out.

When I started training for a triathlon my symptoms became much worse and I need to cut out more processed foods. The increase in exercise seemed to make me sensitive to lower levels of cc. Processed foods, especially grain containing ones were too much for me.

Good idea to cut out soy and dairy as you have. It might just be taking you awhile to heal.

Lori2 Contributor

And it takes about three days for diarrhea to hit for me. Makes it hard to figure out what caused it. It would be a lot easier if it happened immediately.

Karla01 Apprentice

It takes me 24 hours to react also, but now I am starting to notice small symptoms before the 24 hour reaction. I have begun to think mine is cross contamination, I was diagnosed in August and was good until we all started to be more relaxed around the house since there are 4 of my household that are not celiac.

GlutenFreeManna Rising Star

My reactions are delayed as well and just like you describe. The day after I have gltuen I will have the neurological symptoms--shakey hands, brain fog, fatigue, muscle aches and pains, fever even sometiems like I'm getting a cold. I will have stomach pain and C for about 2 days and then 3-4 days of D. So all in all eating just a little gluten puts me out of commission for almost a week.

before you go cutting lots of thigns out of your diet I think you should keep a food and symptom journal. This may help you to look back and see the pattern so you can avoid whatever is cc'ing you. It could also help you to make the connection in your brain that gluten is CAUSING your symptoms. Since the symptoms are not immediate it can be easy to be less vigilant or to just second guess whether gltuen is the problem. However, according to your post, you have a firm diagnosis so there is no doubting your problem is gluten. It takes several months to learn everything and avoid getting gltuened successfully. As an example, I had been gluten free for over a year before I learned that some brands of instant charcoal briquets have wheat in them. My mystery gltuenings from last summer's BBQ's were suddenly solved. You will learn many things like this along the way.

AgainstTheGrainIdaho Rookie

Just like others said, definitely a food journal and/or elimination diet. Rice, veggies, fruits and meat and then slowly add things back in every 3 days to a week at a time. You'll eventually find out what bugging you. Also be aware too that beauty products, Shampoos and conditioners, toothpaste, things like that can also cause chaos if it contains any wheat by products in it too. Good luck. I hope you find what causing the *ick*.


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AgainstTheGrainIdaho Rookie

posted two. Whoops! :P

GFinDC Veteran

Ok, you have been gluten-free for 5 weeks but slipped up 3 times during that 5 weeks? Not surprising at all, it is a real learning experience to go gluten-free.

But your bodies' immune system is not changing it's plan of attack to suit your mistakes. As far as it is concerned you have been invaded by germie monsters 3 times and it is going to destroy them and you to if it has to. Seems I read that antibodies are actively leading the charge and reproducing/multiplying for 2 weeks after an "incident". Then it can take 6 months or so for them to return to normal levels. So 3 slip-ups in 5 weeks equals no time at all when your body is not actively attacking itself.

You are learning why it is important to be strictly gluten-free all the time. Isn't education great? :D

Another issue is bacterial gut flora. You are radically changing the food the little gut critters (in their many thousands) who live in your gut get to eat. That means some of them are going to die off or reduce in numbers while others increase. Different diet, different thrivers. So an adjustment period is normal. A few pro-biotics each week might help with the adjustment, and also avoiding all sugar and caffeine.

Gluten-free is not something most people learn to do "right" in a couple of months. It can take quite a while to get the kinks out. Doing a whole foods diet and avoiding all processed foods will help you adjust faster. Learning to cook is a great idea...

You can do it, it just takes some time to learn and get used to the new foods you should make you mainstays. Your body sounds very willing to help you learn, so you are well off in that regard. Some people have no symptoms and don't know when they have made a mistake. You don't have that problem it seems.

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    • knitty kitty
      Thanks, @trents, lactose intolerance is different than a reaction to casein.  Consuming casein could be causing that continuing antibody reaction causing localized inflammation.  Still worth trying a diet without it. Since you mentioned your father passing, you may want to add Benfotiamine.  Benfotiamine is a form of thiamine Vitamin B 1 that has been shown to improve intestinal health.  Tryptophan is helpful, too.  Tryptophan is derived from Niacin Vitamin B 3, and helps repair the intestinal tract.  Tryptophan works well with the amino acid Theanine.  So all three help immensely.   We need additional thiamine when we're emotionally stressed, physically ill and exercise a lot  or do physical labor.  The brain uses the most thiamine of any organ, twenty percent of intake!   What's your fruity probiotic?
    • trents
      @pilber309, as knittykitty pointed out, lactose intolerance is not the only issue with dairy in celiac community. Lactose intolerance has to do with the sugar component of dairy, lactose. However, some celiacs react to a protein fraction in dairy, namely, casein, like they do gluten.
    • pilber309
      Stop eating oats as it did give me irritation.The only diffrent thing i have been consuming are a new probitics which seem to have a fruit ive never heard of as a prebiotic
    • cristiana
      It could well be a new intolerance developing.  Does your diet incorporate pure oats i.e. those safe for coeliac consumption?  I find I can only tolerate a certain amount, same goes for dairy in fact, then I start to get gastric symptoms.   Or have you started consuming a new type of gluten-free bread, or more gluten-free bread than normal, that might contain oats?  I remember reading a post on this forum from a woman who had started to eat a lot of loaves made with oat flour and her coeliac symptoms kicked off again.  I am sure you know this, but some coeliacs cannot tolerate pure oats.
    • pilber309
      I eat a lot of dairy but its intermittent is this burning so I would assume it would happen all the time. Plus I have been tested for lactose intolerance  etc and I am fine and the other symptoms of that I don't get. As a aside  my dad died last month after a long illness so I wonder if the stress of that might be a influence as a bodily reaction to stress.
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