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Desperate For Answers Feeling Worse Almost One Month Later
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Good evening everyone I'm coming to you hoping for some shredded insight as to what I'm experiencing. I was diagnosed with celiac disease almost one month ago I quit gluten cold turkey and have progressively started feeling worse and worse and worse to the point that I cannot function. I was a silent celiac with none of the typical symptoms it was a fluke that we found out after I went into my physician complaining of weight gain and chronic fatigue. Since I went gluten-free I've been going through the worst withdrawals. I have been exhausted to the point I cannot function I am now having diarrhea I've been having constant headaches have been completely unable to sleep and have been so weak that I can hardly stand long enough to take a shower.

My physician has me on a plethora of supplements including multivitamins digestive enzymes and amino acids to try to bolster my already depleted system but nothing is helping.

I'm so upset that I'm almost one month in and feeling physically and mentally worse than I have ever felt in my life. I honestly want to just go eat a big old loaf of bread and hope that I will at least go back to feeling normal. I felt crummy to begin with but I feel absolutely horrific now. From everything that I've been told and have read I should be starting to feel better now does anyone else have experience with this?

I'm sorry that I'm unloading I just reached a breaking point mentally between how crummy I feel and how little I can function. I also apologize if there are any typos or weirdness in my words is I've been using my voice recognition from my phone and I may not have caught the errors when I proofread.

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You are not alone!  Those with more experience can probably contribute more, but here's my two cents.  Just had Hashimoto's and anemia when I went for a routine colonoscopy.  Blood test positive.  Ate gluten for the next six weeks like a mad person (e.g. loaf of sourdough per day).  Ended up with abdominal symptoms.  Went gluten-free the day of my endoscopy.  Felt bad for about six to seven  weeks.   Not just abdominal symptoms but anxiety too.   Worried that I'd continue to get worse.  But suddenly I was much better!  Abdominal symptoms only appear when I have been glutened.  Found that I can not tolerate quinoa or gluten-free oats.  Working on the anemia and my whacked out thyroid.  Mentally, I'm pretty calm now.  Of course there's that menopausal thing going on but I can handle it.  Reduced my work load but just saying "no".  

 

Road my bike today for 45 miles and came back tired but not exhausted!  It just takes time!  Hang in there!

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Thanks. I am an absolute mess I've been very careful to make sure I did not get glutened. I don't understand why I am so much worse when I should be getting better

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Withdrawl. That is probably part of what is making you feel so bad. Gluten is addicting.

 

Its only been a month. Give it some time.

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Is withdrawal normally this bad?! I literally cannot function between the brain fog the horrible weakness in the dizziness I feel like death

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Yes, the withdrawel can be this bad.

Hang in there pal! Everything is going to be alright.

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Holy hell. How much longer should I expect this to last? I seriously asked my physician to put me in a medically induced coma until all of this passed LOL

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(hugs) You definitely got the short end of the stick when it comes to withdrawal.... a month is a long time.

 

My withdrawal lasted over 2 weeks. I think at 3 weeks it was starting to lighten up a bit. The migraine lasted 10 days, non stop... I still remember that one - it was a doozey.  The fatigue goes with it all. I remember feeling like my get up and go had just gone. I wasn't extra sleepy but I didn't want to move, just sit... alone.

 

Withdrawal will pass. I've heard it can take some up to a couple of months for their body to adjust.  I have also heard that once gluten is gone, other problems can rear their heads - it's almost like it sees it's chance to make you miserable and goes for it. If it lasts a lot longer (past 2 months), you might want to look into other causes like thyroid issues and nutritional deficiencies.

 

I hope the worst is almost over for you!

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My withdrawal lasted at least 3 months.  I think it kept extending when I continuously removed other foods that were causing problems. I also had cross contamination and silly mistakes.   I did have some better days during those few months, but did feel like death was coming, or like I needed to start all over again, on the bad days.

 

I discovered, during that time, that my lowest lows were often followed by the highest highs.  When I felt like I was dying I simply decided to hang on for the next day.  I made it each time.  Many times the next day was better, but sometimes it took another day.

 

I consider taking away gluten a natural way of dealing with celiac.  It is not drugs or surgery.  In many years of trying to heal naturally I learned that for me, "Any reaction is a good reaction."  A reaction means your body is still fighting.  It realizes a change.  Hang on and ride it.  Take some down time when you can.  It is a strain for the body to recover, but it is doing it.

 

I hope you will feel clear headed and stronger soon.

Diana

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I wish I had good days. So far I've felt worse each and every day that passes.

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Hi Rene,

 

I’ve also had some unexpected symptoms going off gluten. Not much happened initially. But after a few days I thought I might be getting a little more energy and mental clarity. Oddly, a 15min bike ride caused me to have stiff-muscle pain, as if I’d worked out like hell. I bike everyday and that doesn’t normally happen. The same happened for other body parts doing other routine exercises. However now, rather than taking 4-5 days to recover as it did prior to going gluten-free, it took only a day. I do FEEL stronger, but, when I actually tested that, it turned out that I was weaker (couldn’t lift as much). It may be noteworthy that for my size I’ve been quite strong my entire life and massage therapists more than once have remarked how my muscles seemed to be in a constant state of exertion. I’ve had intense cravings at times as well, but not for gluten foods per se. Finally at about the 2-month mark I had my first ‘normal’ bowel movement in about 20 years and I feel pretty good but I’m even more exhausted in the morning than normal. Two other peculiar things have happened. I suddenly developed an allergy to hazelnuts and have had all the blood vessels in one of my knuckles break when I was holding something heavy for a few minutes.

 

So this is my take. I think the feeling of being stronger may be due to reduced inflammation and being better able to feel the difference between relaxed/contracted muscles. If the primary response to gluten is an immune/inflammatory response than likely my whole system has been activated and inflamed forever. I wonder if it’s possible that the inflamed state was actually helping maintain a certain level of muscle tone which has now been removed, leading to more normal recovery times but to less demanding workouts. If the immune system was never able to disengage that may explain why it couldn’t respond to hazelnuts before. Or, it’s still in overactive mode but doesn’t have gluten to attack.

 

In any illness symptoms likely build upon each other. As one system becomes incapacitated it causes stress on another system, etc. So when the problem is removed there could be numerous things that need to be rebalanced to reach ‘normality’ again. The friend who told me about the test I took said she felt a bit better in 3 weeks but it wasn’t until 6-8 months that she really felt it. She says she’s never felt that good in her entire life. Hang in there Rene, the fatigue could actually be a positive sign, of recovery. And mood is extremely sensitive to energy levels. Drink A LOT to help speed the recovery and be sure to check that you’re not deficient in something else now, as a result of not eating all the things you used to eat. 

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Good evening everyone I'm coming to you hoping for some shredded insight as to what I'm experiencing. I was diagnosed with celiac disease almost one month ago I quit gluten cold turkey and have progressively started feeling worse and worse and worse to the point that I cannot function. I was a silent celiac with none of the typical symptoms it was a fluke that we found out after I went into my physician complaining of weight gain and chronic fatigue. Since I went gluten-free I've been going through the worst withdrawals. I have been exhausted to the point I cannot function I am now having diarrhea I've been having constant headaches have been completely unable to sleep and have been so weak that I can hardly stand long enough to take a shower.

My physician has me on a plethora of supplements including multivitamins digestive enzymes and amino acids to try to bolster my already depleted system but nothing is helping.

I'm so upset that I'm almost one month in and feeling physically and mentally worse than I have ever felt in my life. I honestly want to just go eat a big old loaf of bread and hope that I will at least go back to feeling normal. I felt crummy to begin with but I feel absolutely horrific now. From everything that I've been told and have read I should be starting to feel better now does anyone else have experience with this?

I'm sorry that I'm unloading I just reached a breaking point mentally between how crummy I feel and how little I can function. I also apologize if there are any typos or weirdness in my words is I've been using my voice recognition from my phone and I may not have caught the errors when I proofread.

This scares me... I am the same way when I stop eating gluten... I'm tired and a mess when I'm eating it, and then once I stop i'm exhausted, but I can usually sleep very well, but I also need to take constant naps to get through the day.. Plus go to bed at around 7ish. I ve only been gluten free for about 2 weeks though, so i'm afraid that one month gluten free will make me feel as crappy as you :(

 

One thing, maybe you have another food intolerance? Some celiac members suggested that I get my thyroid tested and something about hypoglycemia.. Maybe you should do the same?

 

 

 

So sorry that your going through this!

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Are you eating enough? I know in the beginning I didn't - because it was hard to identify safe foods....

And your body is healing, despite how crappy you feel...and that takes energy. Or, I should say, it's changing.

Good luck. I know it's difficult and scary.

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I haven't been eating enough. Can't stand long enough to cook anything and the diarrhea makes me not want to eat.

On a positive note it looks like some of my symptoms are bad reactions of one or more of the dozen supplements my dr prescribed. So I'm feeling a little better now that I dc'ed those and am figuring out what's making me sick

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:) Good! perhaps this is that corner which will make all the difference.

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My two cents. You could be having other food issues due to silent damage done to your digestive tract. If it doesn't get better soon you might try an elimination diet. For me Dairy, Egg and Soy had to eliminated. I was lucky in that I was able to add them back after two years. Dairy and egg went straight through my colon and took everything with them for days afterward. Soy made my flight or fight response go into overdrive. There are several other foods that could be issues so you really might want to try an elimination diet.  

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    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)
       
    • Excellent point, GFinDC!!! I just assumed that Steph had the endoscopy and not just the antibodies tests.    
    • She (your PCP)  can order a celiac blood panel.  It might not be a complete panel, but it's a start.  Any medical doctor can order one.  A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder)  or colonoscopy (IBS).   Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel.  You could go to the lab before or after work.  Pretty easy!  
    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
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