There's hope for you yet!

[paisleydaisy]

Hi! 
Just a positive note from someone 4 years into the gluten-free diet who had questions about worsening food intolerances, no change in lifelong insomnia and ongoing panic attacks (which came out of the blue a few years prior and lead to full blown agoraphobia quite suddenly 'for no reason'). It ALL went away. It took a while but all went away and feels like a different life now. 
I think I'm just posting to say...people told me that some things would take time. And they did. Even if you're feeling better, you might be going to feel even better still in the future . 
I'm STILL feeling better each year. You've got this . 

[cyclinglady]

Congratulations!  And it is sooooo true!  

[Chris the Celiac]

6 hours ago, paisleydaisy said:

Hi! 
Just a positive note from someone 4 years into the gluten-free diet who had questions about worsening food intolerances, no change in lifelong insomnia and ongoing panic attacks (which came out of the blue a few years prior and lead to full blown agoraphobia quite suddenly 'for no reason'). It ALL went away. It took a while but all went away and feels like a different life now. 
I think I'm just posting to say...people told me that some things would take time. And they did. Even if you're feeling better, you might be going to feel even better still in the future . 
I'm STILL feeling better each year. You've got this . 

How Long did it take you to start feeling better? I know everyo es different and healing times are different but Im newly diagnosed, Back in july, and I need serious help!

[paisleydaisy]

I felt worse for a few weeks, in a way I can't quite describe. Most people I know didn't feel that way but I know it's not uncommon. And things that were better felt weird so uncomfortable (ie. stomach all light and airy rather than constantly full). I was starving and sweating and shaking, too, after not having much appetite for years. 
But I felt better after about a month. Nausea took a few months I think? Much longer than I'd expected. Random panic attacks and dizzy spells took about a year to see any change. To the point where I figured they were unrelated and strangely better for no reason but when glutened I get them, now. It's bizarre. I couldn't make one happen if I tried to, I no longer mind public speaking, my whole personality shifted. I'm still neurotic (ha. Always) but not 'anxious'. Years later and my brain feels totally different and maybe it's unrelated but I don't think so and that is better and more noticeable than the abdominal stuff. I don't have bouts of crying or anger that I was having daily, I laugh at stuff, no panic attacks. 
But it took a long long time. If it's even related. Migraines stopped 2 years in after having them multiple times a week for decades. Again, maybe unrelated. Seems like a really long time. 
And I still get sad! Around the social consequences of this, in particular. And overwhelmed. And stressed. To a normal and situational degree though. 
I hope you feel better soon! 

[notme]

yes, this is allllll true - it took some adjusting, lolz, but i am 10 years on the gluten-free diet and i am feeling fabulous.  i do feel much younger because all those problems i attributed to 'old age, i guess' - nope, not old age, just 25 years of misdiagnosed celiac.  i get a check up once a year - one with my gyno, one with my gastro, and twice per year i get my blood tested.  everything is good, i just had it done and i am not deficient of any vitamins or nutrients.  i used to have to supplement with vit d2 and b12, not anymore.  and my anxiety issues are lessening, although i understand they are the last to leave.  i almost flew without my xanax (but i chickened out lolz) - i agree, paisleydaisy, my social anxiety is better, although i don't know if i could do public speaking.  i was, however, an angel in an easter pageant - i wrote my speaking part on my hands and promptly sweated it off 😅  t'was ok, though, i remembered them.  

i LOVE this post - y'all just hang in there, it's gonna be great!!   

[paisleydaisy]

55 minutes ago, notme! said:

yes, this is allllll true - it took some adjusting, lolz, but i am 10 years on the gluten-free diet and i am feeling fabulous.  i do feel much younger because all those problems i attributed to 'old age, i guess' - nope, not old age, just 25 years of misdiagnosed celiac.  i get a check up once a year - one with my gyno, one with my gastro, and twice per year i get my blood tested.  everything is good, i just had it done and i am not deficient of any vitamins or nutrients.  i used to have to supplement with vit d2 and b12, not anymore.  and my anxiety issues are lessening, although i understand they are the last to leave.  i almost flew without my xanax (but i chickened out lolz) - i agree, paisleydaisy, my social anxiety is better, although i don't know if i could do public speaking.  i was, however, an angel in an easter pageant - i wrote my speaking part on my hands and promptly sweated it off 😅  t'was ok, though, i remembered them.  

i LOVE this post - y'all just hang in there, it's gonna be great!!   
 

WHAT A REPLY. Ha. This made me smile so much for multiple reasons. 
Timepoor as I'm reading it so won't write as much as I want to but will say I carried Xanax with me for 2 whole years. But never used it again after the last panic attack. 

What a long time you too were undiagnosed! It's tempting to be frustrated that so much of life was like that. But there's lots of time left to live better! 
Congrats Angel! 

[DJFL77I]

On 10/17/2020 at 8:32 PM, Chris the Celiac said:

How Long did it take you to start feeling better? I know everyo es different and healing times are different but Im newly diagnosed, Back in july, and I need serious help!

my new GI Doctor told me yesterday...   up to a year..... 

 

but it depends on the individual too...

first thing he said when he walked in was  "I see you're newly diagnosed"........   

 I was diagnosed in June

 

 

[Chris the Celiac]

I honestly believe I dont have celiacs. I did an endoscopy and I heard I had very little blunting and atrophy. I also had 6-12 intrapaethelial lymphocytes per 20 villous tips. I started gluten free diet, and very strict with it, and I feel the same if not worse. Ive done a ton of research and before I had the Endo, I was on a PPi for 3 months. Those cab cause villous blunting, constipation, clay colored stools, ect. I found out when I age fruit, I would get the exact same symptoms before I had the endoscopy, and Im also still backed up. Im very confused as to why Im still sick.

[DJFL77I]

you can have gluten with drawl

[Chris the Celiac]

Ive been gluten free for 3 months. I did go through withdrawal. I remember going to the doctor bc I had bad acid reflux and bloating. He said celiacs but I never had acid reflux or indigestion with gluten, only fruits, or any fermentable foods. Im talking with my gastro this friday for some answers bc I wasnt tested right! 

[knitty kitty]

6 hours ago, Chris the Celiac said:

Ive been gluten free for 3 months. I did go through withdrawal. I remember going to the doctor bc I had bad acid reflux and bloating. He said celiacs but I never had acid reflux or indigestion with gluten, only fruits, or any fermentable foods. Im talking with my gastro this friday for some answers bc I wasnt tested right! 

Ask your doctor about fructose intolerance.  Here's an article that explains it.....

https://www.healthline.com/health/fructose-malabsorption

Fructose intolerance can occur with Celiac.  

Ask your doctor to check for vitamin and mineral deficiencies.   Taking a B-Complex vitamin supplement can be helpful, too.  

Hope this helps!

 

[DJFL77I]

did they take a blood test

[moog8]

I went on a traditional gluten free diet first, no wheat at all but still ate gluten free products occasionally though i never really trusted them- i di  that for a few years and still always felt ill. It wasn't until i studied a course in the UK,  where i learnt all about grains, the history of them, what happens when we eat them, exactly what they are etc- then i stopped eating any grain at all and THAT is when I felt better. It was dramatically better too and i just keep feeling better all the time (I've been tow years no grains). I used to blush painfully in social situations, have panic attacks, insomnia and the dizzy spells where i would feel as if i was being punched by and invisible fist and falling down a plug hole!! My eyesight is better- no blurred vision at all, my eye test was significantly better than when i was still eating grains.  Ive managed to put on some weight. No acne/spots anymore. Lastly all of the nausea, consitpation, severe bloating, pain and gas have all but disappeared- I do still get some of these if I accidentally get glutened though- one big thing for me has been avoiding corn in citric acid which is in tinned tomatoes and other things, also in facial products that contain vitamin c derived from corn. I also reacted to some medicinal mushrooms that were grown on oats! it can feel like a minefield but there is certainly a light at the end of the tunnel! I feel prob 90 percent better than I have done since i was 22, i'm now 34, i'm so absolutely relieved and thankful. 

[DJFL77I]

After ingesting fructose, individuals with hereditary fructose intolerance may experience nausea, bloating, abdominal pain, diarrhea, vomiting, and low blood sugar (hypoglycemia). 

[knitty kitty]

2 hours ago, DJFL77I said:

After ingesting fructose, individuals with hereditary fructose intolerance may experience nausea, bloating, abdominal pain, diarrhea, vomiting, and low blood sugar (hypoglycemia). 

https://www.healthline.com/health/fructose-malabsorption#causes

This article is describing two conditions.  

Hereditary fructose intolerance is "most often detected when a baby starts consuming baby food or formula."

Hereditary fructose intolerance:

"A more serious issue and completely unrelated condition is hereditary fructose intolerance (HFI). This is a rare genetic condition that affects 1 in 20,000 to 30,000 people and occurs because the body doesn’t make the enzyme needed to break down fructose."

AND.....

Dietary Fructose Intolerance:

"Risk factors

If you have certain gut disorders such as IBS, Crohn’s disease, colitis, or celiac disease, you’re more likely to have dietary fructose malabsorption or intolerance."

 

Symptoms for fructose malabsorption include:

nausea

bloating

gas

abdominal pain

diarrhea

vomiting

chronic fatigue

malabsorption of certain nutrients, such as iron

 

[Chris the Celiac]

I have not had a blood test at all! Ive actually been eating KitKats with no affects, other than slight bloating. The blost go aways quick tho. When I was diagnosed, the doctors did no follow up testing at all. No one in my family is celiac either. I figured that out yesterday. My grandmother is gluten sensitive bc she has liver cirrhosis and thats it. I had zero deficiencies at diagnosis. The doctors where I live also arent very good doctor at diagnosing things.

[notme]

dang, chris!  if they didn't do any tests, how could your doc diagnose you at all?  i'm confused.  why did they do an endoscopy without the blood test/because of the blood test?

if you *do* actually have it and are gauging your reactions to gluten, consider that you are doing more damage than a little bloating.  untreated celiac can cause a ton of damage to your body systemically.  some of us have even had nerve damage.   you maybe want to get a doctor that knows what they're doing.   if they're confusing celiac with something else, (i hope nothing worse) they should be doing other tests to rule out chron's, c.diff, etc

[Chris the Celiac]

My doctor jumped straight to endoscopy! Before endoscopy I had really bad indigestion, really bad bloating, and so on. They jumped straight to celiac after endoscopy. Ive done a ton of research, not just "so and so said this." Ive read through tons of studies and decided, I need to try to eat gluten too find my reactions because initially I had bad indigestion. I thought, if I react to fruits and stuff that way, how do I react to gluten? So I tried it and feel perfectly fine. I feel no better or worse. Ive eaten 2 kitkat bars and a 10 piece nugget from mcdonalds and feel like I actually eaten something. I came to the conclusion that I just stressed to much. No one in my family has celiacs either, Ive also had allergy testing and Im not allergic to anything. Im trying gluten to see if I do spring any symptoms at all. So far, so good! On my pathology reports, It ssid "suggestive of celiacs" not celiacs. I also had very little blunting. Im emphasizing very little. The doctors where I live jump to first conclusions too quick to actually diagnose things.

[Kate333]

On 10/17/2020 at 10:54 AM, paisleydaisy said:

Hi! 
Just a positive note from someone 4 years into the gluten-free diet who had questions about worsening food intolerances, no change in lifelong insomnia and ongoing panic attacks (which came out of the blue a few years prior and lead to full blown agoraphobia quite suddenly 'for no reason'). It ALL went away. It took a while but all went away and feels like a different life now. 
I think I'm just posting to say...people told me that some things would take time. And they did. Even if you're feeling better, you might be going to feel even better still in the future . 
I'm STILL feeling better each year. You've got this . 

Returning to the OP comment (above), I just wanted to thank you, PaisleyDaisy, for your kind encouragement and upbeat post.

As a "newbie" it is so easy to get depressed, discouraged, esp. when dealing with ongoing symptoms (despite return to normal blood test range).   Not to mention the stress of this pandemic and the uncertainty of the future--for ALL of us, whether we deal with celiac disease and/or other issues.  Like you, I've also dealt with insomnia and anxiety.  Not sure how much of that was/is related to celiac disease or the pandemic.  

I hope it won't take YEARS for my gut/body to fully heal.  But even if so, I recently achieved my goal of reaching a "normal" blood antibody range after 6 months on a gluten-free diet.  I try to remind myself of the importance of celebrating these "small victories" along the journey.  Also, limiting my time watching TV news and on the Internet, esp. consulting with Dr. Internet and Dr. Google, seems to help keep my spirits up...🙂.     

 

 

[GFinDC]

On 10/26/2020 at 6:16 PM, Chris the Celiac said:

My doctor jumped straight to endoscopy! Before endoscopy I had really bad indigestion, really bad bloating, and so on. They jumped straight to celiac after endoscopy. Ive done a ton of research, not just "so and so said this." Ive read through tons of studies and decided, I need to try to eat gluten too find my reactions because initially I had bad indigestion. I thought, if I react to fruits and stuff that way, how do I react to gluten? So I tried it and feel perfectly fine. I feel no better or worse. Ive eaten 2 kitkat bars and a 10 piece nugget from mcdonalds and feel like I actually eaten something. I came to the conclusion that I just stressed to much. No one in my family has celiacs either, Ive also had allergy testing and Im not allergic to anything. Im trying gluten to see if I do spring any symptoms at all. So far, so good! On my pathology reports, It ssid "suggestive of celiacs" not celiacs. I also had very little blunting. Im emphasizing very little. The doctors where I live jump to first conclusions too quick to actually diagnose things.

It's unusual for doctors to jump to celiac disease.  More often it is hard to get them to test for celiac or even consider it a real possibility.  So you have an unusual situation there.  Many times forum members report being tested for various and sundry ailments for years before finally being diagnosed with celiac disease.

There is a gene test they can do that shows the possibility of developing celiac disease, but not that you actually have it.  So it puts you in the pool of possible patients.  So it might be something to ask your doctor about.  You can also ask your doctor to get a 2nd opinion from another gastro for reference.

You have been gluten-free for too long to get reliable blood antibody tests now.  There are a few other conditions that may cause villi blunting but they can probably be eliminated by your GI.

Edited October 28, 2020 by GFinDC

[Chris the Celiac]

Thats why Im going to a different gastro. Iv reibtroduced gluten and feel quite a bit better than I have on the gluten free diet. There was just so much going on that I feel its too simple to jump to celiacs so fast when I had an endoscopy for symptoms that were related to what I thought was celiacs. I strated reintroducing gluten again, slowly bur surely and I can now eat fruits and vegetables again? Im so confused by my body right now😂

[GFinDC]

6 hours ago, Chris the Celiac said:

Thats why Im going to a different gastro. Iv reibtroduced gluten and feel quite a bit better than I have on the gluten free diet. There was just so much going on that I feel its too simple to jump to celiacs so fast when I had an endoscopy for symptoms that were related to what I thought was celiacs. I strated reintroducing gluten again, slowly bur surely and I can now eat fruits and vegetables again? Im so confused by my body right now😂

Well, your GI should tell you that you need to eat gluten for about 12 weeks before doing the blood tests for gliaden antibodes.   They really should have tested your gliaden antibodies before you went gluten-free.  If you had tested positive for the gliaden antibodies you might not be having doubts about your condition now.  Hopefully your new GI will be better informed about the celiac diagnostic process.  They will probably want to talk to your original GI to compare notes.

Anyway, your current gluten diet may start to affect you negatively or it may not.  But keep track of how you are feeling physically and mentally each day for now.  Gluten can affect our brains and emotions as well as our guts and any other part of  our bodies.  If you do develop symptoms you'll need to decide if you are going to stay on gluten long enough to get the blood tests done.

One thing to be aware of is the possibility of developing new food intolerances.  If you read forum members signatures you will see lists of other food intolerances people have developed in some.  These tend to happen after our guts are irritated for a long while,  Then things like eggs, dairy, corn etc can become intolerable also.  Fun stuff!  Not!!! 

[Chris the Celiac]

15 hours ago, GFinDC said:

Well, your GI should tell you that you need to eat gluten for about 12 weeks before doing the blood tests for gliaden antibodes.   They really should have tested your gliaden antibodies before you went gluten-free.  If you had tested positive for the gliaden antibodies you might not be having doubts about your condition now.  Hopefully your new GI will be better informed about the celiac diagnostic process.  They will probably want to talk to your original GI to compare notes.

Anyway, your current gluten diet may start to affect you negatively or it may not.  But keep track of how you are feeling physically and mentally each day for now.  Gluten can affect our brains and emotions as well as our guts and any other part of  our bodies.  If you do develop symptoms you'll need to decide if you are going to stay on gluten long enough to get the blood tests done.

One thing to be aware of is the possibility of developing new food intolerances.  If you read forum members signatures you will see lists of other food intolerances people have developed in some.  These tend to happen after our guts are irritated for a long while,  Then things like eggs, dairy, corn etc can become intolerable also.  Fun stuff!  Not!!! 

Thats what Im doing. On my pathology it said I should do serology before a gluten free diet but...that was never even brought up. Hopefully my new gastro will help me figure out whats going on. So far, I still havent had any sort of stomach pains, diarrhea or brain fog. I feel more normal and that I needa eat to grt my vitamins back. Being gluten free made me lose my appetite for the 3 months I was on it so, I was eating once maybe twice a day! Now that Im eating gluten again, I want to eat more! My body is all whacked up from so much diet change right now😂

[Chris the Celiac]

Update! I spoke with my new Gastro yesterday and he ordered 4 labs to see if I have antibodies in my system! Hopefully well get more answers!

[GFinDC]

Hi Chris,

Your blood antibody tests won't be accurate now if you have been gluten-free for months.  They may not show any raised antibodies because your immune system is not actively making antibodies in reaction to gluten in the Gi system.  Or they may show low levels of antibodies.