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

Thank You!


chrissy

Recommended Posts

chrissy Collaborator

i was talking to my mom today about celiac and once again realized how grateful i am to be able to come on here and get info and help and support from all of you. i have a friend who has been diagnosed with celiac for 8 years---her daughter is a friend of my twins. because of her, i already knew a fair amount about celiac and her daughter helped explain celiac to the other kids at school. she doesn't go on any web sites, so some of her info is not quite up to date. one of my girls commented the other day that i seemed to know more about celiac than my friend who has had if for a long time. LOL!!! probably because i come on here so much!!! i also have to bake from scratch because we don't have alot of money and i have 3 celiac children to feed---she is able to buy mixes. sometimes i think that me knowing her, and her telling me so much about celiac was a blessing for me that was preparing me for what was ahead-----i hope i don't sound too corny!

christine


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



Celiac.com Sponsor (A8-M):



JKJ Newbie
i was talking to my mom today about celiac and once again realized how grateful i am to be able to come on here and get info and help and support from all of you. i have a friend who has been diagnosed with celiac for 8 years---her daughter is a friend of my twins. because of her, i already knew a fair amount about celiac and her daughter helped explain celiac to the other kids at school. she doesn't go on any web sites, so some of her info is not quite up to date. one of my girls commented the other day that i seemed to know more about celiac than my friend who has had if for a long time. LOL!!! probably because i come on here so much!!! i also have to bake from scratch because we don't have alot of money and i have 3 celiac children to feed---she is able to buy mixes. sometimes i think that me knowing her, and her telling me so much about celiac was a blessing for me that was preparing me for what was ahead-----i hope i don't sound too corny!

christine

That sure doesn't sound corny to me! I feel so blessed that i had 2 different neighbors (one with Celiac ) who suggested my 6 week problem with explosive D might be C -- and in 4 days I was doing better! And have been ever since - so I definitely count that a fantastic blessing that I didn't have to suffer for years of much worse symptoms before realizing what my problem was. I still have not gone for testing - but continuously learn from this message board -- and the celiac site. I know I should be doctoring and getting tested but hesitate to go gluten challenge -or even start sharing with my Dr. -- (who I never in 2 years , have felt quite on the same wave length with :) (Maybe I need to change Dr's?) Anyway - corny or not - don't hesitate to share your feelings on this board!

nettiebeads Apprentice
That sure doesn't sound corny to me! I feel so blessed that i had 2 different neighbors (one with Celiac ) who suggested my 6 week problem with explosive D might be C -- and in 4 days I was doing better! And have been ever since - so I definitely count that a fantastic blessing that I didn't have to suffer for years of much worse symptoms before realizing what my problem was. I still have not gone for testing - but continuously learn from this message board -- and the celiac site. I know I should be doctoring and getting tested but hesitate to go gluten challenge -or even start sharing with my Dr. -- (who I never in 2 years , have felt quite on the same wave length with :) (Maybe I need to change Dr's?) Anyway - corny or not - don't hesitate to share your feelings on this board!

I was very fortunate in that I also only had to suffer for about 6 weeks with D before I went to my gp. He had me cut out gluten, two weeks later on my follow-up, I didn't have anymore D; he pronounced me Celiac, go and eat gluten no more. End of story with him - 9 years ago. I've learned more about Celiac from this board than I had in the previous 9 years. I do mention my celiac to my current dr. He doesn't see the need for any more tests. The fact that the diet challenge was good enough for my previous gp was good enough for him. But he did run a series of blood work just to see how I was doing. Everything relatively normal, but my cholesteral is getting up there. That was it. And anytime you're not comfortable with a dr and you have the option to change, it is your perogative, and your health. Just my two cents.

Annette

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.