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lovetofysh

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lovetofysh Newbie

Hi. I have been reading thru the postings and have discovered that I am actually not alone in this battle. I recently suffered pancreatitis and have been sick for months. I've gone through a number of tests including countless blood tests, endoscopy, biopsys, etc. Just last week, I was diagnosed with having Celiac Sprue, severe malabsorption, etc. I was told to completely cut out all gluten & wheat products. I have been doing as much research as possible to learn what it is I can and cannot eat. As of Saturday, I have been, I believe, completely gluten & wheat free. Saturday, Sunday and some of Monday I felt pretty good (although had a few dizzy spells) and figured I could go back to work. Tuesday morning has been a COMPLETELY different story. I woke up nausated and feeling awful. I figured I'd take a nausa pill, feel better eventually and go to work. As the day has gone on though I've noticed that I started getting the shakes, am incredibly anxious and irritated, cant think straight and have been forgetting everything, cry at the drop of a hat (I think out of frustration), am achy and my stomach is bloated and sensitive. I don't feel like a "stable" human being. Is this all part of the withdrawal? How long does it last? Is there anything that a person can do to relieve any (preferably all) of the symptoms????? I dont want to live the rest of my life this way. I have two beautiful very young children and I want them to know that they have a mommy who's fun, loving, etc... not always sick, tired and eats "funny gross stuff" as my daughter put it. I've also havent been to work in over a month and am afraid that if I stay out more I will lose my job (and if I go, lose my mind or relapse health wise). ANY advice, support, motivation or just plain venting so I know I am not alone from anyone would be SO GREATLY appreciated.


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happygirl Collaborator

Love to fysh,

I am about to head to bed, but I had to write to welcome you to the board and offer you words of encouragement. You will get through this---and this board is the best avenue to doing that! I didn't find it right away and wish I had...it would have saved me so much time, effort, and mistakes. The people on this board live with Celiac---we get it....and we were ALL once where you are.

Just a quick note: Celiac damage takes longer than a couple days to heal. It can take weeks or months. So even if you are eating gluten free, you might feel like your health is on a roller coaster. We all wish that we would magically feel better overnight. Unfortunately, it takes time for you body to heal, and then begin to restore itself to normal levels.

Here's the good news!!!!!!!!!!!!!

Once gluten is completely out of your diet, and you heal....your body is generally a normal body, as long as you aren't consuming gluten. Add gluten back in...and you have "turned" your system back on (gluten sets your switch off....so keep gluten out, and the switch is off). So, yes, the life that you dream of....having a normal life....is most certainly possible. And most certainly will happen.

I'll write more tomorrow with some suggestions about food, and I'm sure others will chime in. There are plenty of normal foods that are gluten free. We have people over and unless they knew (which, lets admit, they all know) it was "different," they wouldn't be able to tell. I buy very few "specialty" gluten free products...the rest are naturally gluten free.

We'll get you there---don't worry. Let us know what we can do to help!

Laura

Ursa Major Collaborator

Hi, and welcome to these boards.

Yes, it certainly sounds like withdrawal symptoms to me. They should pass within two weeks or so, and hopefully you'll feel much better after that.

Hang in there, it is bound to get better soon!

Tritty Rookie

I know exactly what you mean! I was feeling so much better, the D had stopped and I felt like I was on the right path and wham! It was like detox (I guess...:))

I was lucky - it only lasted about 2 days for me - then it progressively got better. So hopefully you'll be on the mend here soon :)

A note about the kids - my 3 year doesn't understand why I can't share his goldfish anymore. So now we share fruit snacks instead - just as Yummy and a special treat to him...He keeps asking when my belly is going to heal - how hard is that to explain! But already he's noticed a change in my energy level and the amount of fun we have - so he is starting to be less concerned with me and my belly. So it will look up - I promise - and I've only been at this not quite 5 weeks!

JohnnieHamill Newbie

I figured I'd take a nausa pill, feel better eventually and go to work.

First of all -- you're not alone! That's the best and greatest news! Second, you will go through withdrawal, but there is light at the end of the tunnel...For some people short, for some people long.

I was reading your post and saw the nausea pill...before taking any medication, check to see if it has gluten in it. If it doesn't say anything, don't assume that it doesn't. Call the manufacturer (or check this board, but I would always suggest calling the manufacturer as the ingredients change.) This goes for food items also. What you can read one time says no wheat (gluten), and the next time you will see gluten. This happened for one of my favorite snack foods, Buggles.

Anyway, take nothing for granted. I have been gluten-free since 1993 but have recently been having DH outbreaks (because I cheated in October). I'm realizing that my conditioner has gluten in in, my hand lotion has gluten in it, and other things have gluten in it too.

Needless to say, check the label.

Oh, and finally, I never thought about tortilla chips or french fries having gluten in them from a restaurant...but most of them do because they dont place them in dedicated fryers (they combine all the fried foods usually together in one fryer).

Sorry for the long post, but, I'm still learning thanks to this board!

Peace,

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    • knitty kitty
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    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
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    • catnapt
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