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

Hi, Introducing Myself.


Guest spruette

Recommended Posts

Guest spruette

I was just diagnosed with Celiac Sprue (Disease) yesterday. I am brand new to this diagnosis, for years I thought it was irritable bowel causing all my troubles. Then last year, had a gallbladder removed and I still became sicker. Last week I had an endoscopy done by a OUTSTANDING gastroentrologist and he found in a biopsy that I was suffering from Celiac Sprue.

Couple of questions,

1. Anyone ever have any throat problems along with their other symptoms? Mine for a while felt like I couldn't breathe or that it was "closing up" on me. I was in the ER a lot the past few months before finding my doctor and they kept calling it asthma. But asthma meds didn't work. Nothing did. I am seeing an ENT Thursday but wondered if I am allergic to gluten, can I be suffering some sort of shock from it as well? Just wondering on that one.

2. I saw the post below about joint pain. I have a very very painful left knee, and also suffer from TMJ, could those be caused by Celiac?

I am extremely new to this only finding out 24 hours ago, so forgive my ignorance. Just looking for some guidance and maybe make a friend or two along the way. :)

{{Hugs To my Fellow gluten-free friends}}

Connie


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



Celiac.com Sponsor (A8-M):



minibabe Contributor

I feel and still feel like my throat is closing up......when i try to take a deep breath it feels like someone is sitting on my chest and I just cant do it. I have also had chest pains and doctors just tell me that it is somthing to do with my muscles around my heart and not to be worried, but this is extremely frustrating. If you find out anymore information on it I am willing to go and see and sort of doctor for this and willing to try anything.

I have not had to many joint pains, just what I find is that my hip, nee or shoulder may lock up and it hurts when it pops.

I was just diagnosed about a month ago and I am really new to this whole thing to, but what I found was that I went and saw a nutritionist and it really helped, she was so wonderful and she has the diease so it makes it really easy for her to talk to. The one thing that she stressed was cross contamination. If you need any help or possibly have any questions, feel free to ask and if I can help in anyway that would be wonderful. Welcome to the Message Board! and good luck :)

Guest jhmom

Hi Connie and Welcome :D

I cannot answer your questions but I am sure someone else will be along shortly. Since you were recently dx I thought I would share a few links that really helped me in the beginning:

Mainstream gluten-free Food List

Open Original Shared Link ** must have Adobe to open link**

Open Original Shared Link

Safe and Forbidden food / ingredient list

Good luck on your new way of eating, I know you will be feeling better soon!

zakismom Newbie

I used to have problems with asthma but I haven't used my inhaler since going gluten-free. It's been just about a year for me and the differences are amazing. It will be worth the effort! Good Luck!

mwical Newbie

Spruett,

Hi, I too have just been diagnosed with celiac disease. This is all really new stuff but thank God for the internet. I went to the library and only found one little paragraph in a medical journal about Celiac. I have had joint pain for years and the Dr. I went to for 12 years just kept trying me on different kinds of arthritis meds. like Celebrex and a host of others. I was also recently diagnosed with Diabetes, which my NEW dr. seems to think is connected to celiac disease. Some mornings I could hardly get out of bed and a couple of times I couldn't, and I am only 40 Yrs. old. :blink: I also like you have had throat problems, mine for about 6 years. It too the DR. thinks could be a result of Celiac. I don't know, but all I do know is that I went to my other DR. for 12 Years and have nothing but a pile of insurance reciepts to show for it, and my NEW Dr. found out all this in less than 2 months. Don't know if this helps but anyway, GOOD LUCK! B) Hope you feel better soon.

Guest spruette

Nice to meet you everyone.

I wanted to reply to you all seprately more personally, but I am still figuring out the board here and how everything posts.

Thanks SO much for all your advice. You all seem really nice and I am glad I posted yesterday. I had my first gluten-free chocolate chip cookie tonight and loved it. It was by Pamela's Bakery or something. My Goodness, everything is so expensive though. Wish I could find some less costly foods. Looking for recipes alot on internet to make stuff myself.

I will look at the websites offered here too. Thanks for those, btw.

Looks like I am in the right place. I am happy to know that I am not alone with this being new to me too. Last week, I thought there was something freakish about me, and that I was too different. But without feeling sorry for myself. I just thought it would be very difficult to weed out wheat and gluten products and concerns with health symptoms. It's so great to know that someone thought about a support board for us so we have each other to kind of help through all this.

I am 29 and also looking at possibly testing for diabetes, it's interesting that their may be a connection since Type 2 diabetes runs in the family. Does it cause excessive light-headedness? I am praying that it isn't. At least for a little while. I want to try and get used to one diet at a time.

Sorry to ramble. Thanks to all of you with your great support and advice. I will post here as often as I can. :)

Take care!

Connie

darlindeb25 Collaborator
;) connie--if my memory serves me--many type 1 diabetics also have celiacs, but most celiacs who go gluten-free and stick to the diet can most times not develop type 2 diabetes--i think anyways--you may want to read more about this--google it and see what you find--celiacs + type 2 diabetes--i do know that kids of type 2 diabetics are more prone to the disease---so much to learn huh :( deb

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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

About type 2 it doesn't run with celiac, only type 1 i am not sure why, that is waht i am doing my science fair on.

billfl Newbie

Minibabe....I also cannot take a deep breath w/o the feeling that my throat is closing up, but....I have pulmonary fibrosis. PF is listed as a disease probably associated with celiac disease. My celiac problemssss were exposed after I started taking prednisone and actimmune for the PF. So, the reason for my post is to suggest that if you are also having shortness of breath you should consider seeing a "good" pulmonologist. My PF went untreated for two years after it was noted by a radiologist, but my then primary doc didn't pick up on it.

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. - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

    2. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

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

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748

    KimberlyS
    Newest Member
    KimberlyS
    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

    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
×
×
  • 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.