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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748

    Dorfor
    Newest Member
    Dorfor
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.