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 Celiac.com!
    eNewsletter
    Donate

Me Too!

mmmSmores

By mmmSmores
in Coping with Celiac Disease

Recommended Posts

mmmSmores Apprentice
mmmSmores
Posted

I was also diagnosed in mid-October and I am not feeling much different. I live with my boyfriend who is semi-assuming a gluten free lifestyle. We are very careful about the non-gluten-free food he eats. I never would have thought about wooden spoons.

I was diagnosed by a blood test, but what led me to the blood test was an endoscopy (done for other reasons) and they said the results indicated taht Celiac was a possibility. I read all of the info on this forum that appears under peoples name about what they have and I don't understand. All my doctor said was that I have it and I need to go on a gluten-free diet.

Help

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

Do you have copies of your actual lab work? What it sounds like is they found damaged villi or flattened villi in your intestines (gold standard sign of Celiac), but they did the bloodwork to make sure (a few other things can damage the villi). Your bloodwork was positive also. YOU ARE CELIAC.

You need to be 100% gluten-free to heal. And most have to cut out dairy for a few months as well until symptoms subside.

You had symptoms right? Why did you have an endoscopy?

Link to comment
Share on other sites
The One Apprentice
The One
Posted

Hi and welcome! This has been the most helpful website for me regarding gluten.

It's great that you finally got your diagnosis, I never got a final diagnosis but every time I eat a tiny amount of gluten I'm sick for days, that's enough diagnosis for me!

Healing your intestines is going to take a loooong time, and so will everything else, so it is completely normal that after a month of being gluten free you still don't feel a lot better, but stick to it and it wil be much worth it. A lot of people here can tell you how bad they were (and I include myself in that list) before being gluten free, and all that damage won't go away too fast, I've been gluten free for about a year and some months and I'm stilll battling symptoms and damage that will never be undone like my neuropathy, diabetes, short stature, bone issues/pain, anxiety.

Make sure to eat fresh foods those are the best at the beginning, as processed foods will put too much stress on your digestive system, veggies, fruits, grains, meats, fish and all those things are the best.

All thos things you see under people's signatures are conditions that come hand in hand with Celiac, a lot of people never understood why they had them and Celiac finally offers an explanation and hopefully a solution for many, so stick around this forums, it will be a lot of help and support and stick to the diet and you will see results ;)

AJ

Link to comment
Share on other sites
sbj Rookie
sbj
Posted

Hi Smores:

You sound a bit like me - not sure because you don't give much detail. Perhaps you could flesh the first post out with some more info about any symptoms you have? At any rate, I was also diagnosed after getting an endoscopy for something completely different. I had no outward symptoms whatsoever but my biopsy showed damage and the bloodwork was positive and I have the DQ2 hetero gene, so you and I both have celiac disease.

I am following the diet and I haven't noticed any changes. But that doesn't mean you should cheat. Any gluten you ingest can damage your small intestine and that can lead to problems (eventually) all over the place. I found that my GI didn't give the best advice. Like you, he simply told me to follow the diet and that was it. (He has since reminded me that it is very important to follow the diet even if I don't have symptoms.) I got better advice from my regular intern who scheduled various tests for vitamin and nutritional deficiencies and also got me in for a bone density check.

But the best advice I got, by far, was from a nutritionist/dietitian. Depending on your health plan, I'd try to get a referral to a dietitian. He/she can explain how to follow the diet, help you with labels, give you some good, practical advice (wooden spoons, dairy, natural flavorings, etc), and explain why it is important for you to follow the diet even if you don't have many symptoms. Bring your boyfriend to listen in.

Look at it this way - I need to pop a fish oil tablet each day for my cholesterol - even though I have no symptoms and it doesn't seem to do a thing.

BTW: Wooden spoons are a no-no. Get new ones and don't cross contaminate. Dairy is fine for me but maybe not for you. Natural flavorings depend on whether I have a reaction - check with the mfr, if possible. Never overdo anything you aren't sure about - nothing to excess and don't tempt fate.

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Read as much as you can here and ask any questions you need to. It can take a while to heal and you may need to cut out dairy products for a while. The villi that produce the enzymes to digest dairy are the same ones damaged by celiac. Many of us can add dairy back in after we heal. Do check your makeup and toiletries and if you BF eats gluten or drinks a gluten beverage make sure he brushes his teeth before any kissing. Also try to eat as much whole unprocessed food as you can, it will help you heal the quickest. I hope you start to get some relief soon.

Link to comment
Share on other sites
sickchick Community Regular
sickchick
Posted

It takes most 2- 2 1/2 years to feel better. I have been gluten free since Oct 2007 and am not feeling much better!

hang in there toots! B)

Link to comment
Share on other sites

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,226
    • Most Online (within 30 mins)
      7,748
    NYKaren
    Newest Member
    NYKaren
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...