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

A Disease That Accompanies Celiac


natalieb

Recommended Posts

natalieb Rookie

I am a 39 year old woman who had been diagnosed with celiac disease well over a year ago. Please listen to this.... I have been reading and posting to this forum for quite some time and occasionally ran across postings that sounded like some of the symptoms that I was experiencing after being gluten-free. For example, a year after being gluten-free, I was developing mouth sores, my tongue would hurt and look almost swollen at times, my energy level was at a new low, my antibody tests while seeming to come down in some areas, were spiking in others, also my nose seemed as if it had a clothespin on it, and my eyes would hurt sometimes, esp when I was in the sun. I finally went to see a rhumatologist here in Pgh who drew blood and I came back with a positive ana, rhum. factor, elevated sed rate, and elev immunaglobulin levels. During that time, I also became stiff in my thumbs which scared me to no end. Its just like it happened in one day. Well, the doctors that I saw at the top facility in Pgh told me "We think, it might be rhum. arth, but not sure, the puzzle just doesn't fit". After getting nowhere, I went to the cleveland clinic and was diagnosed with sjogrens syndrome. Sjogrens coincidentally is often found in celiac patients like myself and perhaps a few of you out there who I have read your post. Now that I have a proper diagnosis I am taking plaquenil, an immunosuppressor and feel like a new person. Of course I am and will remain gluten-free. The problems with my eyes and dryness in my nose has not decreased even with the medication, but the extreme fatigue and some of the gut pains are gone. Please please, if you have any of the above symptoms, please get checked, but be careful with the doctor that you choose. The rhum. here told me that I didn't have sjogrens due to a salivary test and an ssa and ssb blood test coming back negative. In fact, these same doctors told me that I needed to get on with my life and just take more tylenol for the pain, despite the fact that I suffer from duodenitis and gastris,(by the way commonly seen in sjogrens patients), So be careful with the doctor you choose. As for me, I will trust a doctor who fellowed at the cleveland clinic and has been there forever, thus, he knows that not all diseases, "fit a perfect puzzle". Just something for you out there to know. <_<


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



Celiac.com Sponsor (A8-M):



ponita Newbie

Wow! I read your post then went to google to research what you were talking about. How do you feel about this dx? What an interesting story. I think you are truly a testament that a person has to keep looking for reasons why we feel the way we do.

Where is the cleveland clinic? Did you see a rhum doc or immunlogist? I'm asking because I have a freind who has some of these symptoms.

I'll be thinking of you.

Melissa

red345 Apprentice

--

Guest barbara3675

OHMYGOSH-----------I just clicked on this subject and it is pretty interesting. I have fibromyalgia and now am being tested through Enterolab for gluten and lactose plus the gene testing too. My fibro has settled from my shoulders to my fingers and that is the only place it hurts. Do you make any sense of this or any connection to what you are talking about? My regular doctor doesn't get ANY connection at all and did a blood test for gluten which came back negative.....I am not sure if the blood test he did was even the right one. I am just sure this is all connected somehow. Barbara

red345 Apprentice

--

deb Apprentice

red345,

Just thought I would let you know that Helicobacter pylori is not a virus. It is a bacterium. You can read all about it by going to the following site [url=http://www.helico.com] If it were a virius an antibiotic would not kill it. I'm not trying to be rude here but you should know that a virius is not removed from the body with antibiotics.

  • 2 weeks later...
red345 Apprentice

Yeah, got that one Deb. My mistake, thanks. My intention was to highlight the infection possibility. I know the difference, but could careless about proper terminology at this point. Remember, I'm an amateur~.


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



Celiac.com Sponsor (A8-M):



Guest momof3

natalieb, I read you post and was wondering if you would be so kind to read mine.

(exterme weakness/fainting spells)?

The one thing that got my attn was the feeling in your nose. I have tried to explain this feeling before to my family. When the spell begins, it feels like my nose is very stuffy.Swollen feeling. My thumbs have stiffined up. They postured according to the paramedic.

Give me your thoughts.

momof3

  • 4 months later...
ncs913 Newbie

So I am recently diagnosed with Celiac's...and I have hypothyroidism...and I have psoriasis...my mother has hyperthyroidism, sjogren's, fibromyalgia, peripheral neuropathy AND lupus...she has had ongoing stomach problems for years and I am having her go back to her GI to get tested for Celiac's. Interesting, huh? Talk about having autoimmune diseases run in the family!

Guest barbara3675

Interesting that this subject has come around again. In addition to the fibro, I have extreme dryness inside my nose all the time, but I thought it is due to the dryness of the weather where I live. I don't have a cold as there are no other symptoms and I feel fine otherwise. When I posted before on this particular thread I was waiting for Enterolab results and they came back saying that I had a gluten intolerance and carried the gene...also a cow's milk intolerance. I have ben gluten-free/cf now for 6 months and things seem to have straightened out, but not my nose, so I think it must be the dry air. However, my fibro is much more under control than before going gluten-free. I will keep in mind the dx of the first person posting on this thread for future consideration, though.

Barbara

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    2. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    3. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    5. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,878
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.