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

New Member: Could I Have Celiac?


missmelissa21

Recommended Posts

missmelissa21 Rookie

Here is my story...

My problems started last December. I had a sore throat that did not go away. It turned out that it was not strep throat and was attributed to allergies. It continued on and off and eventually moved to one side of my throat (though it was not specific to that side, it switched back and forth.) I was put on allergy medicine in March (Fexofenadine-generic Allegra). The sore throat turned into "globus" or the feeling that something is caught in your throat. It felt like there was a golf ball in my trachea (I saw an endocrinologist, when my GP thought it was my thyroid, TSH was 3.49 (0.40-5.50) and my FT4 was 1.2 (0.8-1.8). These were watched for a little while until my TSH went down to 1.22 and my FT4 was 0.9. Also in this time I had a sed. rate done which was 23 (0-25)). I was started on 20 mg of Nexium for suspected reflux. I remained on 20 mg until my next ENT appointment in July, when I told my doctor that the feeling had not gone away. Then, my dosage was increased to 40 mg (20 mg before breakfast and 20 mg before dinner). I still occasionally have the feeling of something being stuck in my throat. I don't have it every day, all the time like I used to, but when I have it is much worse.

NOW, here is when the complicated part comes in. BEFORE this all started, in September 2004 I started college. I started having intense abdominal pain and gas, which I attributed to the food change. Although I continued to have the problem when I returned home for breaks, I never really though anything much about it. I don't remember the problem being so severe in my sophomore year, but the summer after this I worked night shifts at a local hospital. I wasn't eating any different food than I normally would have since I didn't eat meals at night and I ate food from home before I left for work. Still, I experienced extreme bloating on a lot of nights at work. This continued on and off through my junior year and worsened throughout the summer after (this past summer). The pain is now nearly everyday. Sometimes I experience in my stomach up high. Its centered at the bottom of my sternum. Sometimes the pain is lower and is accompanied with the bloating and gas. I think this is more intestinal, whereas the other one is more in my stomach. The pain also radiates into parts of my back. Along with this, I now have more frequent bowel movements, sometimes up to 3 a day, where I was having about 3 a week before. The symptoms are so inconsistant, I wonder if it is anything at all. I am supposed to see a GI doctor soon because of my reflux. I suppose I should mention the rest of my problems, but I don't really feel like being dismissed by a doctor.

I have no idea if I have food triggers. I guess I really haven't attributed it to any specific food. My diet was the same until I came to school and its been the same for the last 3+ years since I've been here.

I have no idea if celiac is right, but I guess I just feel like there is something wrong and I have no idea what. Any guidance would be amazing. Thank you.


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



Celiac.com Sponsor (A8-M):



Ridgewalker Contributor

Believe me, I (along with most of the other people here) totally understand not wanting to be blown off by a doc... But you'll never know if that's going to happen if you don't try. Be insistent that you want a full Celiac panel run- this is five tests I think- I'm sure someone else who has it memorized will post the tests so that you can write them down.

Keep in mind that there is a significant percentage of false negatives for these tests. If they come out positive, then you have your answer. But if they come out negative, it's an extremely good idea to go on a gluten-free diet anyways, and see what happens. Going 100% gluten-free is tricky at first- you'll want to do a lot of reading on these forums, and ask questions- we'll help you.

Your stomach problems are symptoms- not a condition. You need to figure out what condition is causing them, and then treat that. Otherwise, you're just covering up the real problem. If it's not gluten, it could be dairy, or even both.

Your throat issues can also be connected to a food intolerance. When my mother gets "glutened," the first symptom to show up is that her throat gets severely dry- she coughs, her voice is hoarse, and it's sometimes even hard to speak.

Good luck, and I hope you stick around here!

missmelissa21 Rookie

I also forgot to mention that my hematocrit and hemoglobin are low normal (last 2 numbers were 35.8 (35.0-45.0 for hematocrit) and 12.3 (11.7-15.5 for hemoglobin), as well as 16.3 for red cell distribution width (11.0-15.0). I've never been called anemic, so I guess these numbers are okay.

nora-n Rookie

missmelissa, your thyroid numbers say hypothyroid. I know because I have this too.

You also need tests forthyroid antibodies, both for hashi's and for graves. There is this other blocking TRAb that lowers TSH falsely, and your low ft4 shows this might be going on. Many docs are not aware of teh antibody aspect.

Try a thyrod forum like the one at thyroid.about.com , and the hyper forum there where elaine Moore is (She is the one writing about the blocking TRAb making you hypo)

Hypo also often stesses your adrenals and then you get bloating.

missmelissa21 Rookie
missmelissa, your thyroid numbers say hypothyroid. I know because I have this too.

You also need tests forthyroid antibodies, both for hashi's and for graves. There is this other blocking TRAb that lowers TSH falsely, and your low ft4 shows this might be going on. Many docs are not aware of teh antibody aspect.

Try a thyrod forum like the one at thyroid.about.com , and the hyper forum there where elaine Moore is (She is the one writing about the blocking TRAb making you hypo)

Hypo also often stesses your adrenals and then you get bloating.

TSH-1.22 (0.465-4.68)

FT4-0.9 (0.78-2.19)

TPO AB's <10.0 (<35)

TG Antibodies <20.0 (<20.0)

These are my most recent thyroid numbers. I do not have antibodies, correct? Sooo that is what led me here.

missmelissa21 Rookie

Shoot...I keep forgetting to add things. I also have a lot of undigested food in my stool as well as blood (I think?). Its bright red and I cannot tell how often that it happens because I cannot see the contents of the toilet when I am at school, but of the last maybe...6 BMs at home, about four have seemed to have blood in them. I suppose that Dr.s will check for blood and in its presense do a colonoscopy.

I feel like I'm too young for this stuff. I'm sure others feel this way as well.

Question for anyone that can answer. When they biopsy for celiac, do they get it from an upper endoscopy or from the colonoscopy?

Ridgewalker Contributor

From the endoscopy. Make sure they take several samples if they do a biopsy. Celiac damage is very patchy and if only one sample is taken, there's a higher likelyhood that it can be missed.

Edit-- Also, lots of people here do have times where they see undigested pieces of food in their stool.


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



Celiac.com Sponsor (A8-M):



missmelissa21 Rookie
Edit-- Also, lots of people here do have times where they see undigested pieces of food in their stool.

This didn't used to happen to me. Now it happens very frequently. I kind of wonder if it has to do with the nexium.

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. - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    2. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    3. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

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

      Ibuprofen

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

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,885
    • Most Online (within 30 mins)
      7,748

    KateFC
    Newest Member
    KateFC
    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

    • Jay Heying
      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • 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.
×
×
  • 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.