Jump to content
  • 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

De-lurking With A Couple ?'s


Morrisun

Recommended Posts

Morrisun Newbie

I guess I should give a little background. Was diagnosed with celiac disease May '04 by bloodwork. I've had "stomach problems" my entire life, they've been getting worse the last 10-11 years. Looking back now I've realized that there were clues to my celiac disease waaay back when I was a very young child as my baby teeth came in with no enamel on them at all. :o

Anyway, after my diagnosis I figured that if I didn't go gluten-free that I would just continue to have the usual stomach cramps, "D", etc. We were in the middle of moving from one state to another, my DH was retiring from the military, it was an extremely stressful period of time. I'm not trying to make excuses per say, but I honestly did not realize how seriously I needed to take things and I really regret it now. Since my diagnosis last year I have also been diagnosed with Grave's Disease (Jan '05) and have just recently started treatment for that as it took over 2 months to get in to see an endocrinologist. :(

In the last couple of months I've done extensive reading and it hit me that I really needed to go gluten-free now, can't put it off, etc. And to be quite honest I'm sooo tired of feeling horrible. I know this makes me sound like an idiot but I didn't understand the severity of the issue, I didn't realize that by not going gluten-free it was putting me at risk for a whole host of other issues, cancer etc.

I have now been 100% gluten-free for 3 weeks. I have gotten a new toaster, new pots & pans and I've gotten dual PB, Jelly, Butter, etc so as to avoid CC with my DH who is not a Celiac.

The first week, week and a half of being gluten-free I felt better almost immediately. I had more energy, my stomach wasn't constantly "moving", the "D" had decreased greatly. It was great! Now however for the past week or so I've felt much worse and I can't figure it out. I read labels obsessively, I don't eat anything that I'm not sure about, I'm almost positive that I'm not getting any cross contamination.

I have been keeping a food diary for the last two days (so far) and I'm beginning to think that it might be a problem with Dairy, so today I have avoided all dairy. I'm just wondering how long did it take for most people's symptoms to improve greatly? Was there a big difference right away or was it a gradual improvement over time?

Sorry for the novel....I'll appreciate all input!! :)

Jennifer

Diagnosed Celiac May '04

Diagnosed Grave's Disease Jan '05


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



Celiac.com Sponsor (A8-M):



ianm Apprentice

Most will get better over time. It seems that it takes on average 3 months to start feeling better and a good year to be healthy. It took a lifetime for your body to get damaged so it won't heal over night. This lifestyle is not as hard as it first appears. It takes time to learn new habits and break the old ones. Once you get the hang of it you will feel so much better.

Welcome.

KaitiUSA Enthusiast

Yea the problems will go away but it takes time. Mine got alot better after 3 months then i was back to normal a few months after that. Everyone is different with symptoms and healing. Some people have it go away quicker then others. It will be much easier when you get the hang of it...you will find this site very helpful...alot of people on here know more about celiac then 95% of doctors you will find.

I also have graves disease

tarnalberry Community Regular

I want to at least say that it doesn't sound like you were an idiot for not knowing how important it was for you to go gluten-free; you were ignorant of the dangers and you've fixed that by finding out. And let's not forget to say shame on your doctors for not informing you!

mela14 Enthusiast

Dairy could definately be a problem as it is with most celiacs. It's been about 5 months for me and I am still trying to fine tune my diet.

Give it time and make sure you scrutinize everything. gluten-free can ony help you to feel better.

Hang in there!

stef-the-kicking-cuty Enthusiast

Welcome to this message board!

Tiffany, I wouldn't necessarily say, she was ignorant of the dangers. She just reacted like everybody else, who we tell: "Oh, I have celiac disease, I can't eat this" and they look at you, as if you're from mars. Because people can't know. That's because this is so rare, the awareness needs to raise and the doctors should be more informed. I'd say, it's not her fault. How could she know???

But know, you're doing a great job I guess. Did you also check your toothpaste, if it's glutenfree? Your soaps, shampoos, cremes, makeup, bodylotions??? And a lot of celiacs have problems with dairy at first. This is, because dairy is digested on top of the villi. But when they are gone, this isn't possible anymore. So when you're better, you could try dairy again. You might be able to digest it again.

Good luck and if you have a question just ask.

Morrisun Newbie

Thanks guys! I made an appt. with my Dr. for next week. I want to see if he'll do some additional blood work, check my Iron levels and things like that. I have checked my makeup, toothpaste, etc. Now that I've gotten the new pots and pans I'm pretty sure that my chance of contamination is pretty low. When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

Jennifer


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



Celiac.com Sponsor (A8-M):



stef-the-kicking-cuty Enthusiast
When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

This is so right! I wish you good luck and keep us posted!

tarnalberry Community Regular

I just meant ignorant in the "unaware of" sense of the word, not any of the negative connotations that are sometimes used with that word. :-) Ignorance needn't imply fault! :-)

hsd1203 Newbie

For me, the first week was wonderful, and then the next 6 months were kind of up and down, in part regardless of what I was eating (I even moved home and had my gluten-free mom cooking for me). I also had to cut out dairy and soy completely for 6 months, and limit fats and acidy foods as they all bothered me.

It gets better but be patient and read every label every time you eat something :)

Hope you're feeling better soon

H

Archived

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

  • 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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    5. - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748

    AngieMcK24
    Newest Member
    AngieMcK24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.