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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    4. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
×
×
  • 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.