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
      1

      Second chance

    2. - cristiana replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - Wheatwacked replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    4. - dsfraley replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

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

    • Total Members
      133,561
    • Most Online (within 30 mins)
      7,748

    tmk95
    Newest Member
    tmk95
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Mari
      Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  
    • cristiana
      Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues. Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless. Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect. The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten. Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet. I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.
    • trents
    • Wheatwacked
      Anyway, I have no problem with grass fed milk other than the price.  Maybe I should move to Ireland or New Zealand.  They're the only countries that don't feed grains to their cows to increase milkfat and milk volume. A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week.  A year ago I had over 90% stenosis in the right artery and 80% in the left.  Tcar procedure done in the right with a stent.  The results today were right side downgraded to Moderate stenosis and the surgeon did not expect to see as much improvement on the left. (untouched). I must be doing something right.  Recheck in six months.   Mucosal reactivity to cow's milk protein in coeliac disease This paper proves that cassein is the protein in cow's milk is the trigger but the study did not differentiate as grass fed milk.  I haven't found any studies specific to grassmilk. The study does not differentiate alpha or beta cassein.  Google says: some clinicians speculate that grain-based proteins could potentially pass into the milk, though scientific studies typically find no detectable gluten or gliadin fragments in bovine milk regardless of the cow's diet. So given alpha cassein as the trigger, grass fed A2 cassein; thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy; plus the omega 6:3 ratio of grain fed milk is 5.8:1 vs grass fed ratio of 1:1, grass fed milk is less inflammatory.  
    • dsfraley
      Thank you all. Regarding dairy products: I think we are getting to the point that we are ready to try anything, but of course hesitant to cut this out entirely too as he's still a 9 year old and adjusting to a diet missing other foods he's used to. We have already kept him from milk (which he loves) to not overdo the dairy, but complete elimination will be tough. I have heard that the milk/casein association has more to do with its effects on an already damaged gut, such that it is more of a problem when healing and not long term: is the idea/suggestion proposed here that casein is triggering the same immune reaction as gluten would (which is a different matter)?  
×
×
  • 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.