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cavegirl

Diagnosed With Celiac And Still Sick?

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Hey guys,

So, like all of you, I was, unwillingly, thrust into the confusing world of Celiac Disease. Let me just give you some background history.

Andrew (my fiance) and I, began the "Paleo Diet" (gluten, sugar, grain, dairy, artificial flavor free, organic diet) on April 1, 2014. The reason for our lifestyle change was because Andrew had been experiencing constant debilitating nausea and stomach pain for months. (It was something he has delt with since he was a child, but recently, things got a lot worse.) I figured that diet change would help remedy the situation. Around this time, he also (finally!) got a referral to see a GI specialist. After spending only a few short minutes with this new doctor, she decided to send him for an endoscopy and a gluten tolerance test. We had already been paleo (and gluten free!) for about 2 weeks by this time. The doctor told him to eat gluten again regularly for about a week before his tests.

 

Both tests confirmed the worst. It was Celiac.

Once diagnosed, that was it. We didn't get a follow up appointment. We weren't referred to anyone to talk about what the next steps were, and how this could affect our lives. We were just thrown out, with this confusing diagnosis, left to fend for ourselves.

Immediately after the tests, we resumed our gluten free, and paleo diet. We have now been on this diet for 3 months, and yet the symptoms continue.

They seemed to disappear for awhile, but now Andrew is taking Phenergan daily again. He seems to do okay throughout the day, but every evening, like clockwork, (around7 PM), he is overcome with the sweats, and crippling nausea.

 

Can anyone shed some light on what might be causing this? His doctor is, as always, at a loss, and just keeps giving him Phenergan, which just doesn't cut it because we want answers.

 

Thank you so much, and I am really excited to be part of this community!

 

Savannah&Andrew

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Hi Savanna and Andrew and Welcome to the Forum.

 

Start with the Newbie 101 thread under the Coping Section.  This will give you the proper starting point and procedures, read the links too.

 

Also, look for a good Probiotic.  Eat only Whole Foods for a while and skip the processed.  Drink lots of water.  Look into a digestive enzyme if you think it might help.  

 

Colleen

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Sorry to hear that your BF is so sick.

 

I would check to make sure he isn't some how getting cross contamination from some where.  Gluten is everywhere even where you don't expect it.  It can be in hair products, toothpaste, mouth wash, makeup, pet food.  Like Colleen said, read the newbie thread and learn about cross contamination.  

 

Your boyfriend also needs to be checked for deficiencies and followed by a MD.  If his doctor isn't sure what to do, be referred to see a Gastroenterologist. Three months down the road, you probably have a good handle on the diet but maybe seeing a dietician or nutritionist might help.  He might also have other food intolerances.  Dairy is a big one after diagnosis, it is digested on the villi in the small intestine and most celiacs have blunted villi and therefore can't digest dairy.  Soy and corn seem to be others that are common.  An elimination diet might be needed.

 

Does he still have his gallbladder and appendix?  It seems like a lot of Celiacs have problems with those. They never seem to work right.

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Sorry to hear that your BF is so sick.

 

I would check to make sure he isn't some how getting cross contamination from some where.  Gluten is everywhere even where you don't expect it.  It can be in hair products, toothpaste, mouth wash, makeup, pet food.  Like Colleen said, read the newbie thread and learn about cross contamination.  

 

Your boyfriend also needs to be checked for deficiencies and followed by a MD.  If his doctor isn't sure what to do, be referred to see a Gastroenterologist. Three months down the road, you probably have a good handle on the diet but maybe seeing a dietician or nutritionist might help.  He might also have other food intolerances.  Dairy is a big one after diagnosis, it is digested on the villi in the small intestine and most celiacs have blunted villi and therefore can't digest dairy.  Soy and corn seem to be others that are common.  An elimination diet might be needed.

 

Does he still have his gallbladder and appendix?  It seems like a lot of Celiacs have problems with those. They never seem to work right

 

 

What would be the easiest way to find out all the foods he is allergic to?

 

He still has both his gallbladder and appendix, though his doctor has mentioned his gallbladder before, but he didnt' really say anything else about it, so I'm not sure if he ruled that out or not. We have an appointment to see his primary physician this week to talk to him about the problems he's been experiencing. Really hoping to get him healthy.

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Look up information on doing an elimination diet.  Basically you start a diet with a "safe" food list, basic bland foods that aren't bothersome and eat them for three days and nothing else.  Then you add one new food every three days, eating said food three days in a row ( the rawest form if possible), keeping a journal of all foods and drink and any symptoms observed.  Then you can see if there is a pattern of symptoms that would be related to a food intolerance. So if you start with chicken, bananas and rice for three days with no symptoms and then add soy and have headaches for three days, it's probably a problem with soy.

 

I haven't tried an elimination diet so far, I really want to make sure I have gone at least a month without a glutening ( I was just diagnosed three months ago) so I am not getting symptoms mixed up and give up a food I really don't need to.  I am going to become a hermit so no chance of glutening.

 

I had problems with both my gallbladder and appendix, neither of which were "surgical" according to the doctors I had seen.  My gallbladder was non functional (slightly inflamed) and my appendix was inflamed for 5 months before they took it out to find out it was impacted with stool.   

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I would also suggest eating only whole foods for a while.  If your BF hasn't had an endoscopy and doesn't know if his intestines are damaged, they take a while to heal and complex foods can cause some stomach discomfort.  I have noticed that if I eat a wide variety of foods in a day, I feel sick.  I have been trying to limit myself to three ingredients a meal.  That has been helping my stomach discomfort.

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Welcome Cavegirl!

An elimination diet is a wonderful idea, but I would encourage complete elimination of gluten for a period of at least three to six months before tackling a full elimination diet.

Early days in healing can simply be wonky. Any food can be irritating during this time and we often are chasing our tails trying to figure out what causes different symptoms.

If one strongly reacts to a food other than one containing gluten during these early days...ie...dairy is often hard on our systems while healing. Then remove that food for a while and try it again once the system settles a bit.

A food/symptom log is the best tool if there are frequent problems...otherwise take these first few months to become an expert on where gluten is and is not!

Hang in there :)

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Ps... I also strongly encourage folks to eat only whole foods, nothing processed....even the certified gluten-free foods can be tough on the healing system and should be used as occasional treats rather than staples.

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