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

I Am New Here

luvkin

Recommended Posts

luvkin Newbie
luvkin
Posted

HI,

I am new here and have a question.

I was told by a doctor years ago to stop eating gluten, so I cut back on gluten and my "arthritis" went away. I went many years just cutting back. Then I was seeing a psychotherapist for anxiety and panic attacks. I told her about my gluten allergy, she said to get off of it completely. I did not know that it was causing my depression, mood swings, anxiety, panic attacks, brain fog, IBS, headaches, and feeling sick all the time. I have been off of it for over 6 months now. I feel great now! I spoke to my doctor (different from the first) about being tested for it. She told me that it is very invasive and not needed. If I feel so much better by not eating gluten, then don

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted
My question is, if a person feels so much better not eating the gluten why does a person need to be diagnosed to continue to not eat gluten? From what I have found out about gluten intolerance and Celiac disease is that the doctors in the US have not caught up with the science yet. If we all lived in Europe the doctors there would just tells us not to eat it. The US doctor
dlp252 Apprentice
dlp252
Posted

Hello and welcome! You're right, even my doctor told me that diet is a valid indicator.

Guest Villanfam
Guest Villanfam
Posted

Welcome :)

As far as I know you cannot be allergic to gluten. You can however def. be allergic to wheat but that is not considered to be celiac disease unless you are both allergic to wheat and intolerant to gluten (celiac disease) "depression, mood swings, anxiety, panic attacks, brain fog, IBS, headaches, and feeling sick all the time" are definitely symptoms of celiac disease. Those symptoms are termed "neurological celiac disease" check out this thread: Open Original Shared Link

It's kind of a long thread but it's worth reading.

I wouldn't hesitate being 100% gluten-free or having your kids be 100% gluten-free either. You don't need a Dr.

Daxin Explorer
Daxin
Posted

Just to echo what has already been said, If you feel better, than stay off gluten. My doctor told me that should be enough of a signal in and of itself to show me that I was intolerant at the very least!

I was surprised as well at how many other "symptoms" cleared up after going gluten free. (I had bad heart palps)

Nantzie Collaborator
Nantzie
Posted

Wow! Smart doctor! That's great to have that support.

Since you had been gluten-limited and then gluten free for so long, the testing almost definitely would have come back negative.

I think there is one big reason to go for a diagnosis or at least evaluation by your MD -- To make sure there are no other health problems either instead of or on top of gluten issues. I have a strong family history of cancer so personally I have to be very mindful of health problems. My dad died of stomach cancer. So I wanted to make sure there wasn't something more scary or just something different like ulcers or diverticulosis going on that might need to be followed up on by the doctor.

I think a couple of the big reasons people make a decision to go for a diagnosis rather than trying the gluten-free diet are:

- Not wanting to make a drastic change without having to. The thought of the gluten-free diet can be daunting at first. And what if you do all that and it doesn't work. So many of us being so sick for so long, most of us feel like we've tried everything with either only partial improvment, or temporary improvement. What if this is just one more thing that doesn't work.

- Family members/friends not "believing in" celiac. This is such a common thing to hear about here it's just ridiculous. A lot of the time they have watched us be so sick for so many years that when we think we might be intolerant to wheat, it just sounds like another bizarre health kick. So the people around us think we've finally gone off the deep end. They don't know what it's like to live with these symptoms every day for years and sometimes decades. Then we end up feeling like we have to prove it rather than live it.

Nancy

luvkin Newbie
luvkin
Posted
  • Author

Thanks for the replies.

My struggle right now is convincing family members that have the same symptoms I have to stop eating gluten. Depression, fatigue, mood swings, food allergies and IBS run ramped through my family. I have an aunt who says she cannot eat sandwiches every day because she feels awful if she does. We all also have a problem with pork, too. They have stopped eating pork.

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

Celiac.com Sponsor (A8-M):


Viola 1 Rookie
Viola 1
Posted
Thanks for the replies.

My struggle right now is convincing family members that have the same symptoms I have to stop eating gluten. Depression, fatigue, mood swings, food allergies and IBS run ramped through my family. I have an aunt who says she cannot eat sandwiches every day because she feels awful if she does. We all also have a problem with pork, too. They have stopped eating pork.

This is one of the reasons people insist on getting a firm diagnosis of Celiac Disease. It is an inherited disease and when I got the "paper work" I could say to my mother, brother, daughters etc. that "here it is in black and white" Go and get checked because your children, sister etc. could very well have this if they have symptoms. My daughter did get tested and was possitive and hopefully she will not have the problems I have because of not getting a diagnoses for so many years.

The second reason is that, for those of us at a low income level, we can and do get some tax relief to help cover the high cost of gluten free foods.

happygirl Collaborator
happygirl
Posted

Welcome to the board----we are happy you have found us!

There are two different sets of advice I give....one to people who have yet to go gluten free and want to know about testing, and one for those who already went gluten free.

Since you are already gluten free---I agree with your doctor. If you switch doctors, you might get arguments if you have "true" celiac---thats fine-----tell them you are just gluten intolerant.

If you want, since it is a simple bloodtest that is the start of testing (you don't have to have the biopsy), it might be worth getting an app't soon, and having your kids tested. You can still start them all gluten free after that---but then, you'll have some results. (But, non Celiac gluten intolerance won't show up on blood work for Celiac). For those who haven't started the diet, I do think it is worth it to attempt to get a diagnosis, if they have a doc who is willing to run the bloodwork.

By the way-why did your doctor in the past tell you to go gluten free? Were you tested for an allergy or Celiac?

Laura

luvkin Newbie
luvkin
Posted
  • Author

No test, just a lot of symptoms. I have been checked for just about everything else. All symptoms went away when I quit eating gluten. I have been able to go back to college after having to quit after 9 years.

happygirl Collaborator
happygirl
Posted

luvkin,

Wow-that is awesome! Going gluten free has helped so many people, and I'm happy you were able to continue your education....that is so great!

We don't really care on this board-we are here to help anyone who is on a gluten free diet. Sometimes its easier to help answer questions when we know a little bit more background.

Laura

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. Anne G
      - Anne G posted a topic in Related Issues & Disorders
      0

      celiac disease and braces

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and...
    2. trents
      - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    3. HAUS
      - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free...
    4. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    5. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,434
    • Most Online (within 30 mins)
      7,748
    Malia Ana
    Newest Member
    Malia Ana
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anne G
      celiac disease and braces

      By Anne G · Posted

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and did it cause any problems or issues with gum recession?  Her dentist seemed oblivious that celiac patients are at higher risk of gum disease /cavities. Her bottom teeth are crooked but are pretty hidden even when she smiles. Thank you!!
    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
×
×
  • 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.