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

Could I Have Celiac?

*lee-lee*

Recommended Posts

*lee-lee* Enthusiast
*lee-lee*
Posted

hi everyone - i just found this board today and spent most of my day at work reading! i am 27/f and am awaiting the results from my blood work to find out if i have Celiac. i have a few questions that i'm hoping you all can shed some light on - i'll try and be as clear as possible but i've got a zillion thoughts running through my head these days!

here's my history:

my grandmother has celiac disease (honestly not sure how long she's had it...i'd say more than 5 years, if i had to guess). i've been having symptoms for a few months now but have ignored them or attributed them to stress/anxiety/etc. the stomach cramps, diarrhea and general urge to run to the bathroom got too be too much to take so i finally went to see a GP on Friday.

the nurse did her thing and informed me i had a low grade fever (100.3) and my BP was a little high (122 over 91) - both which are very odd for me. the visit was quick as the doctor was running behind so i mentioned the Celiac history in my family and my symptoms and she sent me for blood work. (She also wants me to provide stool samples but i'll get to that in a minute...) I should have the results in about a week. she also did a brief rectal exam but didn't find anything out of the ordinary.

oh and i'm always always always tired. i don't feel rested unless i get at least 10 hrs of sleep each night. and i've been fighting trochantaric bursitis for 10 months now. i've never really thought that's what it was but that was the only diagnosis i could get. feels like joint pain in my hips that will radiate down my legs. it's subsided quite a bit in recent months but flares up once in a while now.

i'm confused as to why i can eat certain food sometimes and i'm not affected at all. but other times it's nearly immediate. is this common in Celiac or could i have something else? Also i've gained weight in the last 6 months - not a ton but i definitely notice it and i would say i'm considered overweight. I was also very active in high school with sports and was thin/average weight as a result but not so much anymore. i've read that some people gain weight prior to diagnosis but it doesn't seem all too common.

i have a billion and one questions for my doctor and i was a bit frazzled after my appointment on Friday. she and the nurse pretty much tossed the stool sample containers and some general instructions at me in the hallway on my way out. i'm now wondering what they're testing for in the stools...the paper says Stool Culture & Sensitivity (C&S) and Ova & Parasites (O&P) - does this mean she thinks i have a "bug" or something? I really don't want to do the stool samples (because who would??) if the blood work is just going to show Celiac. in total i have to give 4 samples, on 3 consecutive days. i know i'm complaining but it's so inconvenient - i work full time in an office and it's just not an option to collect a sample during the day. i have a follow up appt in 3 weeks so i think i'm just going to wait and see what the blood shows and hear what the doctor has to say. i'll have a list of questions so i don't forget to ask anything.

are there any more tests that have to be performed if the blood comes back positive for Celiac? it's exhausting to fight the feeling of being sick after i eat so i'm trying to be more conscious of my gluten intake but i don't want to skew any tests i may need in the near future.

thanks for listening and i appreciate any info/insight anyone can give me! (i'm sure i'll have more questions...i just can't think of anything else right now.)

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

The first thing that I'd suggest is a magnesium supplement. Many including myself find it to be very helpful for muscle/nerve pain issues, and so much more. Also, it would probably be a good idea to start taking a sublingual methylcobalamin (B12) supplement, as it is also very important for nerve health, among other things. These two nutrients should also help with energy levels, sleep patterns, complexion, mood, and lots more.

Yes, a certain percentage of Celiac sufferers do gain weight, so you're not alone there. As for your seemingly inconsistent reactions, that might well be the case, but I'm thinking that there could be a delayed reaction. Also, consider food combinations. Since dairy is often a problem for celiacs, especially at first, you may be having some problems with that, and when combined with gluten it might be what makes symptoms more pronounced. Also, many on this board find that in addition to gluten, they need to avoid other common allergens, such as soy, corn, eggs, nuts, nightshades, etc.

Although I never bothered with any testing, many feel that they want to have an "official" diagnosis. Usually this comes down to a biopsy, but unfortunately, it is hit and miss. It often comes back negative, even when blood work is positive and dietary response is overwhelming.

So no matter what the results of tests turn out to be, it is always a good idea to try the gluten-free diet and see how you feel. The diet is actually the best test there is.

I hope you get all the answers you need, and this board is a great place to get them! The members here are incredibly helpful and knowledgeable.

Welcome to the board!

*lee-lee* Enthusiast
*lee-lee*
Posted
  • Author

thanks RiceGuy - you mentioned complexion....i've had the worst time with acne in the past 7-8 months but would have never put the two together. it's like i'm 14 years old all over again! I never had acne growing up so it's quite a shock. i'll check out those supplements and hopefully my skin will improve - along with everything else.

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,435
    • Most Online (within 30 mins)
      7,748
    Vivien Armstrong
    Newest Member
    Vivien Armstrong
    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

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.