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

Just Diagnosed And Very Hopeful


Debbie48

Recommended Posts

Debbie48 Rookie

Hello everyone,

I am 48 years old and just diagnosed with celiac disease. I have had some symptoms for many years now, but within the past 6 months have developed bone and joint pain, sensory peripheral neuropathy, muscles cramps, muscle twitching and more. I'm relieved to have a diagnosis. I am sooooo hopeful this diet and lifestyle change will make me fell well again!

I've been reading the boards since being tested last week. It was mentioned to stick mainly with whole/unprocessed foods in the beginning so I went to the store to stock up. I also read that it's a good idea to avoid dairy in the beginning.

I'm going to order the book that contains 37,000 gluten free foods list. I think that will help. No one else in my family has this as far as we know but I've suggested they get tested. I have 3 children and I want them to be tested as well as my siblings.

Any good ideas about breakfast? I purchased Silk vanilla soy milk. Can anyone confirm that is gluten free? I also bought corn chex and I see that is gluten free. Otherwise, I'm going to stick with meats, fruits, and veggies for awhile.

I'm so nervous . . . I don't want to mess this up. I'm sure I will. On the way home from the store, I started drinking a gatorade that was in my purse from yesterday. Then it hit me . . . I have no idea if THAT is gluten free.

Debbie


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Hello & Welcome

You got the right idea...Remember naked meats no seasonings already on it, marinades, sauces or rubs.You can add that yourself.. McCormick labels ....clearly ;same with fish fruits & veggies , just make sure they are plain or naked foods& you will be okay..

Vinegar is okay but not malt vinegar, watch soy sauce...then many different members of the wheat family, spelt, farro & so on all wheat...

I don't do well myself with alot of soy. In the 80's doctors wanted women having everything soy which was not good so they have changed the soy idea..Plus soy & thyroid is not a good mix...

We love almond breeze( not good for nut allergy ), the vanilla 90 is good on cereal..I don't drink any milk in a glass...

Breakfast, eggs,cream of rice,Bob's Red Mill hot cereal, toast, meats, fruits,cereal,pancakes using club soda instead of milk...

Goats milk is easier to digest.....They do have rice milk yogurt..

I also would avoid gluten-free oats until your body has a chance to heal....

Any other questions just ask. Go to the recipe section for some good goodies....

hth mamaw

AVR1962 Collaborator

Yes, stick with a real basic, whole diet for now to allow for healing of your system. If doc has not yet ran a test for your vit levels I would definately request that. The twitches and the pain you are having from neuropathy can be helped with the correct vits, there are various post here that specify nutrition for neuropathy. It is possible you may find more sensativities to foods as you journey thru these first stages so keeping a food log is a very good idea also so you can figure out what it is that is giving you issues. Best to you!

zimmer Rookie

No one else in my family has this as far as we know but I've suggested they get tested. I have 3 children and I want them to be tested as well as my siblings.

I, too, have children, and had mine tested right after my diagnosis. Having children around made me quickly realize that the whole house needed to be gluten free. They get the stuff everywhere - counters, plates, utensils, hands that touch everything, etc. I just could not be certain about it. So now the only gluten in the house is sandwich bread (for school lunches) that I control plus I have taught the kids how to make sandwiches properly.

They whine about it now and then, but have gotten used to it. They can have whatever they want outside the house. And for a treat I will sometimes buy a bag of pretzels or something that is relatively easy to keep contained. Wheat is not healthful for anyone to be eating anyway, so we are eating better now and I don't feel like I'm depriving anyone of anything. I think my whole family has gone through withdrawal from gluten!

Incidentally my 7 yr old, whose blood work was negative, recently complained of a bad stomach ache after eating spaghetti from a restaurant! So I guess she probably has an intolerance and is better off gluten-free.

Again, good luck with it and hope you are feeling better soon! You have a great attitude about it and that will help tremendously. :D

Korwyn Explorer
I'm so nervous . . . I don't want to mess this up. I'm sure I will. On the way home from the store, I started drinking a gatorade that was in my purse from yesterday. Then it hit me . . . I have no idea if THAT is gluten free.

Hi Debbie!

I'm glad you got your diagnosis and seem to have a good grasp on where to start. You'll get lots of advice, but I wanted to give you two pieces of advice as well: First) Buy Living Gluten Free for Dummies. Seriously. It helped me so much. It kept me from losing my mind, any more than I already did anyway; Second) Stop being nervous. If you accept that you will make mistakes -- more than one if you are like everyone else :) and get glutened, you can look at it as an educational opportunity! Don't let the fear of accidentally getting glutened make you so afraid of making a mistake that you stop enjoying life! Because now that you have your diagnosis and you know what has been making you sick you should be on the road to enjoying life again! So don't stress overly much. You'll learn as you go and that'll be okay! :D

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,827
    • Most Online (within 30 mins)
      7,748

    Rebecca Hurst
    Newest Member
    Rebecca Hurst
    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

    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
    • sleuth
      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
×
×
  • 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.