New to gluten free, feeling very weird

[Annie-]

Hello ,

Here goes my first post ... New to this forum and new to being gluten free.

I have been really sick for about two years now and have been misdiagnosed with anything and everything .

Recently I have started working with a new doctor and he has concluded its Hashimoto and told me to go off all gluten , and for now dairy, too. I also have hormone imbalance and we are int he process of sorting everything out.

I started eating strictly gluten free last Monday, 6 days ago. And I have been feeling worse and worse after day two. My joints hurt so bad it's hard to do anything. I'm feeling dizzy, cotton head-ish, nauseated and I have pain in my lower abdomen. I have weird mood swings, too.

I have read that some people experience this afte gojgn gluten free, as a sort of withdrawal ( I'm no stranger to withdrawal as I got prescribed medication after another misdiagnosis , which has affected my central nervous system and I'm still recovering from that, too. It took me two years of which I was bedridden for seven months , also not knowing I had Hashimoto on top of it).

i have had some testing done for thryroid and the endocrinologist kept prescribing me thryroid medication, which made me feel super ramped up and like I was going crazy. 

i was feeling so hopeful that I would finally start feeling better after not eating gluten but it seems I'm one of the people who react really odd to it for now?

Can anyone relate and maybe give me some hope that this isn't all that uncommon or ANYTHING?

i feel so awful....I don't know what to do..

thanks so much for  reading 

[cyclinglady]

Welcome Annie!  

I do have some concerns!  I assume your doctor has diagnosed you with Hashimoto's based on a thyroid antibodies test?  Do you have the actual lab results?  Hashimoto's can cause wild swings from being hyper to being hypo making it difficult to manage thyroid replacement dosages.  I personally went through this just before my celiac diagnosis and going through menopause all at the same time.  It drove my doctor crazy!  Everything did calm down when I went through the menopause window and I went gluten free because I have celiac disease.  

I have been reading that going gluten free may help thyroid issues.  But that it is not recommended to do so until you have ruled out celiac disease per all the leading celiac disease experts.   There is a huge link between celiac disease and autoimmune thyroid issues.  

Open Original Shared Link

Now, here is an article from The Patient Celiac who is a member of Celiac.com.  She is a premie doctor who happens to have celiac disease and Hashi's.  

Open Original Shared Link

Okay, so going gluten free is not going to harm you.  It may even help your Hashi's to calm down, but to commit to a lifelong diet when there is not much research to support this dietary change can be very tough.  And to get tested for celiac disease after being gluten free is really hard to do, especially if you really do have celiac disease.  So, think about getting back on to gluten and ask your doctor for a complete celiac blood test panel.  If it's negative, go ahead and give the gluten-free diet a try. 

Open Original Shared Link

Open Original Shared Link

 

 

 

I hope this helps you!  

[cyclinglady]

Oh yeah, gluten withdrawal is very real! 

[SBand3]

I had the same issue. For the first few days gluten free I felt pretty great. Then all of a sudden I started to feel horrible. It took me about 6 weeks to start to feel better, maybe a little longer. I started to have more energy and my brain fog was gone. The only thing that hasn't gone away is my joint pain. It can take awhile for you to feel better. Your body is adjusting to the new diet and not having things its used to having. After I was on the diet for two months my Dr. put me on vitamins. Since then I have improved even more. 

It sucks and can take awhile and some things may need adjusting but stick with it! It is totally worth it. Make sure after being gluten free for a few moths you get your tests redone so you can get a better idea what your body still needs and how it is improving. Some people find they have other foods they cannot tolerate after going gluten free.

 

[Annie-]

Ugh, I am trying to reply to the messages above individually but it's not happening.. A bit of brain fog and finding out how it works with the quoting en replying.

but thank you all so much for replying and for the welcome ,  I really appreciate it. 

Cycling lady: yes, I had an anti bodies test done a few months back but the endo at the time gave me thyroid replacement drugs. Yikes... I had no idea. The current doctor is doing more testing. I had a brain scan done and everything, too. They could just never find out what's wrong with me and the last two years have been nothing short of horrific. It's maybe nothing  to do with gluten..but how does your hashimotos get regulated if not with thryroid meds? It's all so confusing!

SH&3: thank you. I'm so glad to have a reply from someone who also felt worse after. Not that I want this for anyone but it's a validation. Most stories I read are about how people start to feel so much better and it kind of felt hopeless when I didn't . I've had the brain fog and something I call dizziness but isn't boatiness ( stay with me...it's hard to explain ) , for a few years now and it's stopping me from socializing and driving and all the nice things I like to do. 

Im wondering too, about maybe eating some things now that I didn't before ( such a quinoa, more corn ) that are triggering some response. Yuck...it's really bothering me. 

 

Thanks,

annie 

 

[LookingforAnswers15]

Hi Annie, hang in there. I know you are going through a lot but although slowly, you are figuring it out. I felt worse as well and realized that other food affected my joints and caused pain. I am waiting to get my thyroid tested now. Regarding Hashimoto, I know what I have heard from one friend who has been recently diagnosed. She is not on any medication either but she takes Vitamin D and I believe Selenite (if that is what it is called). The doctor told her to just keep an eye on her symptoms and if she notices any other symptoms to go back to him.

Brain fog is common. I almost felt relieved that this is an actual thing. I always used to be someone who could do anything I set my mind to but after I got out of the hospital and began gluten-free diet, my brain just did not work. I also had dizzy spells and literally had to hold onto something not to fall down because my knees would start shaking. I fainted once but luckily did not hurt myself. I also had a pain in my lower left abdomen. I thought it was an ovarian cyst or something but it turned out that it is from celiac. Once the doctor prescribed me antibiotics that had gluten in it and I felt pain there. 

You will figure it out. It sucks for sure that we go through this but it is the only body we got so we do our best to get better. Some people complain about having a flu and they do not even realize what people with autoimmune diseases go through. 

My advice to you is: pay close attention to all food ingredients now so that you see if some food that is gluten free actually bothers you because your body needs to heal. Also be your advocate. I have been probably labeled a hypochondriac but I live in a country where medical care sucks. For doctors, it is easier to say it is just stress than to actually do their job. I am not the most positive person these days when it comes to me (since I worry about other symptoms) but when I read your post, I felt that you should know that you will get better. Since I have experienced some things you are experiencing and they got better for me, I am sure they will for you as well.

Regarding food: pay attention to your body when you eat: nightshades (eggplants, tomatoes, potatoes, and peppers), dairy, corn, oatmeal, and sweets in general. I noticed that my joints and palms hurt more when I consume sugar. When I had very crazy symptoms and horrible joint and lower back pain, I consumed everything i mentioned above. Then, I cut out all of this and started feeling better. The other day, I found gluten-free and lactose free chocolate and I did indulge in it since I did not have it since September, and soon after I experienced pain in my palm. Even if you cannot eat this at first, you can introduce it later on after you heal. I recommend eating rice and eating sweet potatoes. Also, bone broth is super healthy for us.

[cyclinglady]

Annie, 

Your endo may have prescribed thyroid replacement because 1) at the time your lab results indicated you were running hypo or 2) he had hoped a tiny bit of hormone replacement might bring down your thyroid antibody levels.  Option 2 occurred for me when I was first diagnosed with Hashi's almost 20 years ago.  Eventually, my thyroid slowly gave out becoming more and more hypo.  So, my thyroid replacement was increased according to my lab results and my how I felt!  As far as stabilizing your thyroid....well, if doctors knew the answer, they'd be rich and famous.  Autoimmune disorders can be just managed.  There are no cures -- if your lucky a remission.  

My advice still stands that you should get back on gluten and ask for celiac testing (autoimmune) before you try going gluten free before attempting to calm your Hashi's (autoimmune).  The advice about other food intolerances is correct.  Celiacs often develop them (corn is a biggie) when their guts are damaged.  

[Vanby]

Hi Annie,

I'm also new to the site and new to the disease. 

On Nov 3, 2015 I was diagnosed with not only Celiac disease but I also had Fatty Liver Disease and pancreatitis. In the beginning it is not fun. I have had my symptoms for decades and every doctor missed the signs. The medical industry has disintegrated to the point where you are just a number and the Dr.'s just don't care if they diagnose you or not. 

When I first went in the hospital I thought I had more stones in my liver because of the pain. That is when I met a Dr that actually told me if I don't go gluten free, dairy free, soy free and grain free that I will be heading for a liver transplant. I started my new diet and new lifestyle that day and haven't looked back. It has only been a few months but the journey was not easy. For the first 3 weeks I had so much pain, constant dizzy spells, nauseous all the time. I thought for 2 weeks of it that I was not going to make it though. I was never out of pain. Looking back I don't know how I functioned at all. Then about the 4th week I started getting small windows of reduced pain. As I stayed on my diet I felt like I had more energy but still had so much pain. But if you figure I have been sick for decade it is going to take some time for my body to rebuild itself. 

Now I'm at the end of my 3rd month. I still have some liver and stomach pain, but it is no longer constant. I'm feeling better. Still have some dizzy spells. Good thing is that I have dropped 24 pounds since Nov.3 and that is with no extra exercise. I am finally starting to see a future that can be pain free. 

Hang in there, it is not easy and it is so hard because the people around you can not even imagine what you are going through. But thanks to the internet you can find people that can relate. You can do it!

[DCExpress]

Hi there,

this really caught my attention because certain key words jumped out in the post, and every single reply!   "Brain fog"  is very real, as anyone experiencing it can attest, and I understand that many illnesses can cause it. But since it hasn't  been visited yet, I'd like to mention chronic Lyme Disease. It does exist and many many people are misdiagnosed with Hashi's, RA,  Alzheimer's, EBV, FM, and even (get ready, hysteria. Lol) and a ton of other illnesses.  It is a testable,  bacterial ilness that, when tested for properly, can be diagnosed. Every symptom listed here, and in the replies, is standard issue for Lyme. Lyme affects our autimmune systems in such a way that over time, we develop gluten intolerance, neurological symptoms (my brain cannot remember what coffee smells like, even though every single morning I ask "who stepped in dog poop!" And every morning, the answer is always the same-"  thats coffee brewing. " I  smell and taste pine all the time, I have joint and muscle pain that travels around my body by the day and hour. One day I am so weak In the legs I LITERALLY have to stay down, the next day, perfectly fine.  I cry for no reason, (PSA) and forget how to get home sometimes. Landmarks don't exist for me anymore. Thats Lyme, but my point to all this, is as long as you're testing, get tested for Lyme if theres the slightest chance of a tick being in your area. The right antibiotics can make your life worth living again, if Lyme is the culprit. 

Best wishes!

[Annie-]

Thank you all so much for responding,

the more I read the more scared I get.

im feeling really confused and there is this icky feeling coming from my neck, traveling like a cloud over my head , making me dizzy. I don't know if this makes any sense.

i don't know where to start right now. Wondering if I should eat gluten today and then test first.

 

also, DCexpres... What kind of test is reliable? I've been tested before and it was negative but I head you get lots of false negative results ..

ugh, I don't know right now.

sorry to  be such a bummer on here right now.

 

[Annie-]

Hello again,

I hope someone reads this still?

so, the pain became pretty I tolrable yesterday and I felt so depressed and awful.  After reading here , I figured I should get a celiac test first and give up my gluten free a bit. So, tomorrow I'll talk to my doctor and aske her for a test. Is there anything in particular I need to ask for?

my symptoms are extreme fatigue, hair loss, IBS, thryroid issues, dizziness ( my worst and never going symptom, nausea, feeling down, lower back and abdominal pain... I have a lot more but those are most prominent.

i didn't want to eat gluten. I was off of for almost a week now. But ok... I guess I need to do this first.

its such a vicious circle. For my thryroid I should not eat gluten. I may get worse. But in order to sort it all out I should not give them up for now, I guess .

i think the gluten withdrawal was too much for my compromised system. I have read how gluten can act on the opioid receptors for some. No wonder my muscles and joints hurt like crazy the day I went off of them. Would that be reasonable to think like that ?

im just kind of panicked about the whole thing right now and I don't know if it's helpful to kind of " taper off" gluten more gradually ?

does it even matter? Sorry if this sounds dumb, I just have lots to learn. But... Does it even make a difference if someone eats one bite of something containing gluten or a hundred ?for the withdrawal part of it, does it makes sense to gradually go off gluten?

My system is compromised due to the two year taper I have behind me, from a drug I got prescribed that I actually, looking back, never needed. It was a misdiagnosis.

im easily set off, being home bound again. I'm pretty scared right now, of it all. To be honest.

not sure what to do and would love some input. Anything is appreciated.

 

thank you so much for reading .

[Annie-]

On January 23, 2016 at 9:34 AM, cyclinglady said:

Welcome Annie!  

I do have some concerns!  I assume your doctor has diagnosed you with Hashimoto's based on a thyroid antibodies test?  Do you have the actual lab results?  Hashimoto's can cause wild swings from being hyper to being hypo making it difficult to manage thyroid replacement dosages.  I personally went through this just before my celiac diagnosis and going through menopause all at the same time.  It drove my doctor crazy!  Everything did calm down when I went through the menopause window and I went gluten free because I have celiac disease.  

I have been reading that going gluten free may help thyroid issues.  But that it is not recommended to do so until you have ruled out celiac disease per all the leading celiac disease experts.   There is a huge link between celiac disease and autoimmune thyroid issues.  

Open Original Shared Link

Now, here is an article from The Patient Celiac who is a member of Celiac.com.  She is a premie doctor who happens to have celiac disease and Hashi's.  

Open Original Shared Link

Okay, so going gluten free is not going to harm you.  It may even help your Hashi's to calm down, but to commit to a lifelong diet when there is not much research to support this dietary change can be very tough.  And to get tested for celiac disease after being gluten free is really hard to do, especially if you really do have celiac disease.  So, think about getting back on to gluten and ask your doctor for a complete celiac blood test panel.  If it's negative, go ahead and give the gluten-free diet a try. 

Open Original Shared Link

Open Original Shared Link

 

 

 

I hope this helps you!  

 

On January 23, 2016 at 11:53 AM, DCExpress said:

Hi there,

this really caught my attention because certain key words jumped out in the post, and every single reply!   "Brain fog"  is very real, as anyone experiencing it can attest, and I understand that many illnesses can cause it. But since it hasn't  been visited yet, I'd like to mention chronic Lyme Disease. It does exist and many many people are misdiagnosed with Hashi's, RA,  Alzheimer's, EBV, FM, and even (get ready, hysteria. Lol) and a ton of other illnesses.  It is a testable,  bacterial ilness that, when tested for properly, can be diagnosed. Every symptom listed here, and in the replies, is standard issue for Lyme. Lyme affects our autimmune systems in such a way that over time, we develop gluten intolerance, neurological symptoms (my brain cannot remember what coffee smells like, even though every single morning I ask "who stepped in dog poop!" And every morning, the answer is always the same-"  thats coffee brewing. " I  smell and taste pine all the time, I have joint and muscle pain that travels around my body by the day and hour. One day I am so weak In the legs I LITERALLY have to stay down, the next day, perfectly fine.  I cry for no reason, (PSA) and forget how to get home sometimes. Landmarks don't exist for me anymore. Thats Lyme, but my point to all this, is as long as you're testing, get tested for Lyme if theres the slightest chance of a tick being in your area. The right antibiotics can make your life worth living again, if Lyme is the culprit. 

Best wishes!

Ah, I figured out the quote function.

tha k you for replying .

im so sorry you're suffering like this. It sounds really awful.

i do recognize some of your issues. And I'm wondering if you could help me out and let me know what test I should ask for.

i have had a Lyme test before but really, I don't know how reliable that was. I had tick bites more than two decades ago. I never had any signs that showed up such as red circles or anything but I read that that's not always happening.

thank you for replying. You're having so many issues and still taking the time to help out.  Much appreciated .

[cyclinglady]

On January 23, 2016 at 11:53 AM, DCExpress said:

Hi there,

this really caught my attention because certain key words jumped out in the post, and every single reply!   "Brain fog"  is very real, as anyone experiencing it can attest, and I understand that many illnesses can cause it. But since it hasn't  been visited yet, I'd like to mention chronic Lyme Disease. It does exist and many many people are misdiagnosed with Hashi's, RA,  Alzheimer's, EBV, FM, and even (get ready, hysteria. Lol) and a ton of other illnesses.  It is a testable,  bacterial ilness that, when tested for properly, can be diagnosed. Every symptom listed here, and in the replies, is standard issue for Lyme. Lyme affects our autimmune systems in such a way that over time, we develop gluten intolerance, neurological symptoms (my brain cannot remember what coffee smells like, even though every single morning I ask "who stepped in dog poop!" And every morning, the answer is always the same-"  thats coffee brewing. " I  smell and taste pine all the time, I have joint and muscle pain that travels around my body by the day and hour. One day I am so weak In the legs I LITERALLY have to stay down, the next day, perfectly fine.  I cry for no reason, (PSA) and forget how to get home sometimes. Landmarks don't exist for me anymore. Thats Lyme, but my point to all this, is as long as you're testing, get tested for Lyme if theres the slightest chance of a tick being in your area. The right antibiotics can make your life worth living again, if Lyme is the culprit. 

Best wishes!

 

 

[cyclinglady]

6 hours ago, Annie! said:

Hello again,

I hope someone reads this still?

so, the pain became pretty I tolrable yesterday and I felt so depressed and awful.  After reading here , I figured I should get a celiac test first and give up my gluten free a bit. So, tomorrow I'll talk to my doctor and aske her for a test. Is there anything in particular I need to ask for?

my symptoms are extreme fatigue, hair loss, IBS, thryroid issues, dizziness ( my worst and never going symptom, nausea, feeling down, lower back and abdominal pain... I have a lot more but those are most prominent.

i didn't want to eat gluten. I was off of for almost a week now. But ok... I guess I need to do this first.

its such a vicious circle. For my thryroid I should not eat gluten. I may get worse. But in order to sort it all out I should not give them up for now, I guess .

i think the gluten withdrawal was too much for my compromised system. I have read how gluten can act on the opioid receptors for some. No wonder my muscles and joints hurt like crazy the day I went off of them. Would that be reasonable to think like that ?

im just kind of panicked about the whole thing right now and I don't know if it's helpful to kind of " taper off" gluten more gradually ?

does it even matter? Sorry if this sounds dumb, I just have lots to learn. But... Does it even make a difference if someone eats one bite of something containing gluten or a hundred ?for the withdrawal part of it, does it makes sense to gradually go off gluten?

My system is compromised due to the two year taper I have behind me, from a drug I got prescribed that I actually, looking back, never needed. It was a misdiagnosis.

im easily set off, being home bound again. I'm pretty scared right now, of it all. To be honest.

not sure what to do and would love some input. Anything is appreciated.

 

thank you so much for reading .

Annie, 

Here are the tests:

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes! 

 

[Annie-]

19 minutes ago, cyclinglady said:

Thank you Annie, 

Here are the tests:

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes! 

 

Thank you so much for answering !

one more thing about this.... Do I need ALL those tests or are those the ones available ?

since you said one is older and less reliable ?

 

sorry for being so all over the place 

[cyclinglady]

The AGA tests are old, but some countries still use them (we are an international forum) ?!  I highly recommend getting your doctor to run both the DGP and the TTG tests?  Why because personally, I tested positive to only the DGP IGA test.  My TTG (both IGA and IGG) and the DGP IGG tests were negative.  The TTG test is the preferred screening test.  But if my GI had not run the complete panel my diagnosis would have been missed.  My biopsies (via endoscopy)  revealed moderate to severe damage.  I still test that way, so it was not a fluke.  From my research, it appears only toddlers test this way!  My doc was perplexed.  Remember, the blood tests are not perfect, so covering them all is worth it. 

[Annie-]

I just got back from a Meeting with my doctor.

she agreed on celiac / gluten test.

it says " celiac disease panel" and she said there's three tests in one. And that when two turn out positive, she'd recommend a colonoscopy , and having samples taken.

so, I'm going to do that test tomorrow. 

 

Just wanted to to update on that. I'm really very curious. It will be challenging I'm sure, if this turns out to be the culprit. But after years and years of having symptoms and not being able to live life normally, never knowing what's going on... I'm kind of desperate to get an answer. 

 

Wish me luck ...

thanks,

annie 

[kareng]

3 hours ago, Annie! said:

I just got back from a Meeting with my doctor.

she agreed on celiac / gluten test.

it says " celiac disease panel" and she said there's three tests in one. And that when two turn out positive, she'd recommend a colonoscopy , and having samples taken.

so, I'm going to do that test tomorrow. 

 

Just wanted to to update on that. I'm really very curious. It will be challenging I'm sure, if this turns out to be the culprit. But after years and years of having symptoms and not being able to live life normally, never knowing what's going on... I'm kind of desperate to get an answer. 

 

Wish me luck ...

thanks,

annie 

A colonoscopy might be a good idea, but it won't diagnose Celiac.  You need an  endoscopy with biopsies.  An  endoscopy is the top half of the digestive system.  A Colonoscopy is the lower part.

[Annie-]

45 minutes ago, kareng said:

A colonoscopy might be a good idea, but it won't diagnose Celiac.  You need an  endoscopy with biopsies.  An  endoscopy is the top half of the digestive system.  A Colonoscopy is the lower part.

Ay....yep.. Red face  here. I mean endoscopy. Thanks for catching that. ?

[kareng]

3 minutes ago, Annie! said:

Ay....yep.. Red face  here. I mean endoscopy. Thanks for catching that. ?

 

3 minutes ago, Annie! said:

Ay....yep.. Red face  here. I mean endoscopy. Thanks for catching that. ?

That's OK.  I can't tell you how many times I have seen GI doctors tell people a Colonoscopy would diagnose Celiac.  I just wanted you to have the knowledge!

 

[frieze]

and you should only need one test positive..

[Irene Joanne]

I found out a couple months ago that I have celiac and also that my thyroid antibodies (TPO) were  high. I was on a low dose of synthroid as well when I went gluten free. Two weeks after going gluten free, I started getting chest pains. I went to emergency at my local hospital to be told my heart seemed fine and it was probably a muscle issue. Same answer at a doctors appointment a few weeks later. Finally five weeks later- still having chest pains and starting to feel really bad. I was dizzy, completely unable to focus and just feeling really off. I skipped a day of synthroid and the chest pain was gone- took one the next day and it was back. So now, I'm completely off synthroid and the chest pain and feeling weird is gone. I'm guessing since going gluten free my digestive system was digesting more synthroid then I needed and I was being overdosed. Blood work to check my TPO levels 7 weeks after going gluten free showed my levels had gone from 648 to 580. This means gluten free is helping my thyroid! Hopefully the levels keep dropping the longer I am gluten free

[MissyBB]

It's a very real phenomenon - this gluten withdrawal. When I did it, hmmmm...I think it's been three years now (or is it four?...anyway...!) since I had wheat/gluten. And I will never forget the withdrawal.  It took me about 10 days to get over it. I thought I was going to die. EVERYTHING hurt. I felt like an old lady with arthritis. I was in pain, and my mood was brutal!!!  I was super tired, couldn't think straight. It was just awful!

Point is, if is very common to feel worse before you feel better.