Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

newbie: emotional issues accepting Gluten Free Life

Gma of 3

By Gma of 3
in Coping with Celiac Disease

Recommended Posts

Gma of 3 Apprentice
Gma of 3
Posted

I found out roughly 3 -4 months ago by accident that I am gluten sensitive.  One day I woke up and had joint pain in just about every joint on my left side. ie, elbow, wrist, knuckles, hip, knee, ankle and feet.  I was already having issues with intense foot pain that I mistook for plantar fasciitis.  Once I googled the symptoms, and realized ALL of several other things were happening at the same time as a result of gluten as well, I knew the answer.  I had been bloating in my belly for decades, and also having migraines for years,  but as of this year, I was looking VERY pregnant after each gluten episode. This was highly upsetting.

  I am 52, and fairly active otherwise.  I had Migraines, depression, anxiety and now joint pain and peripheral neuropathy.  I'm on anxiety meds, and have hypothyroidism and diabetes 2.   Getting to the bottom of the problems with my symptoms finally, has been exhilarating and exhausting at the same time. 

I cannot test for Celiac because my insurance won't pay for this since I am not anemic and have no family history of Celiac. 

Since I have been eating gluten-free, I have been feeling better, besides the mistakes that produce symptoms within 30 min-an hour. When I make a mistake, my symptoms come on faster and faster, and also more intense.  For example, I ate at a restaurant thinking I was okay, and by the time I got home and exited the vehicle I looked 7 months Prego, and my feet felt like I was walking on razor blades.

The last week or two has been the best for not making mistakes, and finally I can eat without feeling horrible.

Here's the thing:  I still can't wrap my head around this!  I comb through the forum for answers and have learned so much!  I have an extremely supportive boyfriend.  I just am in so much denial about this.  It's emotional for me and some days I just can't handle it.  I know many people with full blown Celiac's disease have it way worse than I do, I just can't deal with this very easily.  Has anyone else been through the denial phase and emotional upset upon realizing the life changes that have to happen just to feel better when eating?  What did you do about it?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Short answer to this:

 Has anyone else been through the denial phase and emotional upset upon realizing the life changes that have to happen just to feel better when eating?

All of us!!!!!! It's mourning & it's normal. Breaking down in the grocery store & sobbing? Yep. Normal & I think we've all done it at least once if not multiple times.

I would love to say more but dinner is calling me to go make it so I have to run for now.

HUGS!

Jmg Mentor
Jmg
Posted
46 minutes ago, Gma of 3 said:

What did you do about it?

I wrote a big moany rant!

First few weeks are rough.  It gets better as you get your head around it.  But your response is natural and as SI says weve all gone through it. 

This is the process: Open Original Shared Link 

Best of luck :)

 

 

Victoria1234 Experienced
Victoria1234
Posted
45 minutes ago, Jmg said:

I wrote a big moany rant!

First few weeks are rough.  It gets better as you get your head around it.  But your response is natural and as SI says weve all gone through it. 

This is the process: Open Original Shared Link 

Best of luck :)

 

 

JMG,  I just read your link and the posts about your non celiac diagnosis and although they are about a painful experience, they are enjoyable to read. You are very talented. Have any of your jobs involved writing?

Jmg Mentor
Jmg
Posted
25 minutes ago, Victoria1234 said:

JMG,  I just read your link and the posts about your non celiac diagnosis and although they are about a painful experience, they are enjoyable to read. You are very talented. Have any of your jobs involved writing?

Yes, I used to write a lot, for work and pleasure. Now, not so much. Which probably explains why you guys have to suffer the occasional bout of nonsense!

Pauliewog Contributor
Pauliewog
Posted

 I have a friend with MS, another with breast cancer and a third with RA.  At the same age my only problem is I cannot eat gluten!  So when I start getting frustrated about food I think about that and how lucky I truly am.  Once you get in the swing of it it gets easier and then you start to feel better which makes it all worth it. 

  Also when I first went gluten-free I read on this group about Mark's daily Apple and the Paleo community. I turned to that which was extremely motivating.  I've never seen so many people so excited about not eating gluten. It was a very positive energy and motivated me to find other foods to eat. Also, they love bacon! 

Gma of 3 Apprentice
Gma of 3
Posted
  • Author

Well thanks everyone seriously. I'm sure this will get better and I'm thankful this reaction is normal. So guilty when I think of others worse off than me. I will read and read and read until I've taught myself to feel better. And then help others ((((hugs all around)))

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ya Ya Newbie
Ya Ya
Posted

Hi!  Yes, we've all been there-- sad, angry--- I remember having a meltdown in a Whole Foods parking lot, thinking I would Never be able to enjoy a meal again.

Since you have reached the magic age of 50+, you might be due for a Colonoscopy/--- and in the 'pre' appointment, you should discuss your concerns with the gastro doc----- usually one Does have to eat gluten for a good length of time before the procedure---sorry--- but it might be just the way to get a diagnosis!!!

take care!

yvonne

squirmingitch Veteran
squirmingitch
Posted

2 weeks of eating gluten for an endoscopic biopsy as opposed to 12 weeks for celiac serum panel.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,916
    • Most Online (within 30 mins)
      7,748
    TrevorT
    Newest Member
    TrevorT
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
    • Jack Common
      What should I do with these test results?

      By Jack Common · Posted

      My old results (almost a year ago) are: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months and after I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   I didn't have any symptoms now except tiredness but I think it's just work. I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range. What do you think this time? I think I don't have celiac disease. But this test... 
    • Wheatwacked
      Anyone else with very high HDL?

      By Wheatwacked · Posted

      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      Anyone else with very high HDL?

      By plumbago · Posted

      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Anyone else with very high HDL?

      By trents · Posted

      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
×
×
  • Create New...