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Newly Gluten Free, New Symptoms

Soconfused27

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Soconfused27 Rookie
Soconfused27
Posted

Hi everyone. I had a positive blood test for celiac come back about 2 months ago. I had a endoscopy done the end of June. I just got a copy of the results and I have a follow up appointment next week. The biopsy results are mild intraepithelial lymphocytes, chronic inflammation and mild villous atrophy.

After my blood test came back positive, I was told to trial a gluten free diet immediately after the endoscopy. I eliminated all gluten from my house and after a few mishaps in the beginning, I believe I have been gluten free for 2 weeks now. I know not to expect to feel better immediately but what I didn't expect was to get an entire list of new symptoms. Since my appointment isn't until next week, I wanted to see if anyone else experienced this.

I did not have any gut issues until after I went gluten free. Since eliminating gluten I am super bloated everyday, my belly gurgles all the time, and I have a burning feeling in my stomach. I also get extremely dizzy when I am trying to do my gardening, (ie sitting down weeding and standing up). My gums are getting worse, my fatigue has increased and numerous others.

This on top of my other symptoms is driving me insane. Has anyone else experienced new and worsening symptoms? If so how long until they started to calm down?

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nvsmom Community Regular
nvsmom
Posted

It almost sounds like you are hypoglycaemic and not getting enough calories. Postural hypotension tends to be worse for me when I haven't eaten for a while too. Perhaps your body is still adjusting to a new and lower glycemic load, and you aren't eating often enough...just guesses. I do hope you feel better soon!

w8in4dave Community Regular
w8in4dave
Posted

I got all that right be for I went gluten-free. My gums are better now, altho I still don't think I am eating enuf. Because I do feel slightly dizzy when I stand up. Sorry I didn't answer any question. Altho I did want to say. You may not be as gluten-free as you think. I thought I was and lo and behold I wasn't  2 weeks is not very long, I have mine written down @ home but I think it is about 6 weeks now. I still find little things that have gluten in them I didn't think did. Make sure you check every single label, or look it up on line. Good luck! 

Soconfused27 Rookie
Soconfused27
Posted
  • Author

Thanks for replying. I hope there's no gluten sneaking in anymore! This fatigue is insane, I have been sleeping 12-14 hours a night and with 3 small kids that's too much!. My doctor recommended a low glycemic index diet as well as gluten free because of feeling hypoglycemic at times. Something along the lines of an effective pancreas hitting sugar with a high dose of insulin causing it to fall too quickly.

The strange thing about being diagnosed with celiac is that my symptoms were not gut related. My biggest complaints are memory loss, anxiety and strange feelings in my head. Along with no get up and go, joint and muscle pain, mouth problems, hair loss and weight loss. I actually spent the last 7 years trying to figure out and being told it was all anxiety. I am just really hoping that my issues are all caused by celiac and not something else.

On another note, does anyone have any supplements or vitamins they recommend? I was taking 2 centrum forte a day as per my psychiatrists recommendation for hair loss but recently stopped because I find them hard on my stomach.

w8in4dave Community Regular
w8in4dave
Posted

That may have to be asked in another thread about the Vitamins. 

 

Did want to say that my daughter is hypo glycemic also and she does really good with the Paleo diet. She has not been Dx'd with Celiac but we think she is, Hypo glycemic I do believe can be a symptom, I seen a Youtube with a girl that had it, was passing out and stuff (Just like my daughter) And she had said once she started the Gluten free she felt so much better!! I know it takes time , changing your diet is hard, and your body needs to adjust to it. Good luck !! 

frieze Community Regular
frieze
Posted

probiotics, and digestive enzymes.

PamelaB Newbie
PamelaB
Posted

Have you had your blood levels checked for possible anemia. I was fatigued beyond belief and found out I was severely anemic but didn't know the cause therefore they did and endo to look for GI bleeding and ended up getting diagnosed with Celiac. Even though a year ago blood tests for celiac disease were negative. But since the biopsies were positive, I am now positive for celiac disease. With celiac disease there the inability the absorb nutrients led to my anemia. It is just a thought. On another note, when I first went gluten free, I felt just like you. I am now 5 weeks gluten-free and still am battling the process. It takes time.

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Half Asleep Newbie
Half Asleep
Posted

Hi everyone. I had a positive blood test for celiac come back about 2 months ago. I had a endoscopy done the end of June. I just got a copy of the results and I have a follow up appointment next week. The biopsy results are mild intraepithelial lymphocytes, chronic inflammation and mild villous atrophy.

After my blood test came back positive, I was told to trial a gluten free diet immediately after the endoscopy. I eliminated all gluten from my house and after a few mishaps in the beginning, I believe I have been gluten free for 2 weeks now. I know not to expect to feel better immediately but what I didn't expect was to get an entire list of new symptoms. Since my appointment isn't until next week, I wanted to see if anyone else experienced this.

I did not have any gut issues until after I went gluten free. Since eliminating gluten I am super bloated everyday, my belly gurgles all the time, and I have a burning feeling in my stomach. I also get extremely dizzy when I am trying to do my gardening, (ie sitting down weeding and standing up). My gums are getting worse, my fatigue has increased and numerous others.

This on top of my other symptoms is driving me insane. Has anyone else experienced new and worsening symptoms? If so how long until they started to calm down?

Sounds familiar.  I originally went to the doctor looking for help with my terrible anxiety.  I had no stomach issues before going gluten free.  I've been off it for 3 weeks now and have had everything from constipation to diarrhea, to my stomach feeling like it's tearing itself up, nausea, gurgling...    I went to the doctor today about it-it was the first time I left the house in 5 days because I have been feeling awful.  Still having days of bad anxiety, and a hard time sleeping.  Doctor thinks my anxiety might be causing the stomach issues and I just have to give it time.  I have been taking magnesium, 5htp, probiotics, Adrenevive, progesterone (mine was low), and she wants me to start taking Glycine because I tested low for that too.  Sorry I can't help with how long it lasts-I'm still waiting to feel better too.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I found my anxiety improved hugely when gluten-free a few weeks, hope yours does too. Anxiety is my first symptom when glutened now, but it passes in 2 to 3 days now.

AlwaysLearning Collaborator
AlwaysLearning
Posted

I slept quite a bit in the first few days, had plenty of gluten mishaps in the first month but generally felt much better overall in addition to having lots of odd symptoms just disappear. 

In hindsight, I think I felt better in that first month in part because I had been taking a multivitamin when I first went gluten free. Though a whole list of gluten-related symptoms were gone and stayed gone, when I started skipping the vitamins again, fatique, dizziness, and abdominal pain all kept getting worse. And despite testing as deficient in vitamin D, vitamin B12, and iron, I just have a hard time believing that popping any sort of pill is good for me.

But the vitamin D supplements definitely helped with the sleepiness, the iron with the dizziness, and the B12 with the abdominal pain and bloating which can be pretty darned severe. But I still don't think I have it all worked out. I'm just starting to get these dificiencies fixed and am by no means sure other than anecdotal experience.

But if you are at the point of discomfort that you describe, I suspect that just taking a multivitamin (gluten-free of course) will make you feel better in a matter of minutes. (I swear I could feel them hitting my bloodstream.) But get a doctor to test you. I'm thinking that I need to go back and get a more complete work up and I may need a B12 shot as the OTC tablets seem to wear off in less than a day.

Also, if you do have deficiencies, do more research on your own beyond what your doctor tells you. For instance, I read something about a B12 shot alone not being enough because when B12 levels rise and get back to work in creating new blood cells, they use up other vitamins in your system (like iron) so other deficiencies may actually get worse. Not sure about that one yet, I need to do more research. 

If anyone knows more about this, I'd love to learn more.
 

mamat78 Apprentice
mamat78
Posted

I would suggest getting your b12 checked. I am not b12 deficient but my levels are in the low range. If you have mild villi atrophy, there is a good chance you are not absorbing b12. I also take a bcomplex vitamin for energy and stress. Seems to help :) 

answerseeker Enthusiast
answerseeker
Posted

I'm a little over 3 weeks gluten-free and I am so tired. I sleep until after 9:00 am and still need a nap mid afternoon and then I'm tired again by evening.

So I guess it's diet related and I agree not enough calories. I've just started drinking ensure plus and have a appointment next week with a dietician.

The fatigued is awful! I have my own handcrafted jewelry business and I'm finding it hard to get up and work on orders

w8in4dave Community Regular
w8in4dave
Posted

Pffttt found  some stuff I have been eating that is NOT gluten free... Not funny!! Anyhoo I just wanted to add , you can have Celiac and not have gut issues , some do and some don't ... you don't have to have any issues to have Celiac .. From what I hear or i guess read 

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    • MI-Hoosier
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