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 To The Site...looking For Advice/input


MsModelSara

Recommended Posts

MsModelSara Rookie

Hello everyone. I have never been tested or anything for Celiac deisease or wheat/gluten intolerence or any allergy. I am thinking about doing some kind of test though. I have noticed (especially recently) that whenever I eat carbs or anything with wheat and such I get bloated and crampy. I've also seen bloody stools..I know gross and possibly too much info...sorry! I also can't get enough sleep the night after eating stuff like that either, like yesterday I gave in and ate a bunch of breads and junk foods because I have been working out alot in the gym trying to tone up and slim down a bit (I've been doing a low carb diet sort of thing and was feeling pretty good). I slept about 12 hours lastnight, and I still feel cramps lower than where my tummy is, because I get the cramped feeling slightly in my stomach immediately after eating some things but not enough to cause any kind of real pain. I hate getting gassy after eating some foods..mostly carb related, and most carbs have wheat or gluten in them somewhere I've noticed. and I always feel really bloated in my tummy area, and it's hard to lose weight! even as I am SLOWLY losing ounces here and there and dropping body fat by working out so hard, I haven't lost any inches, and even gained in my tummy area which was really disappointing. I'd like to hear any thoughts from anyone about this. A few weeks ago I even went to Barne's and Nobles to check out diet books and flipped through a gluten free diet book...but ended up going with atkins because it worked for me a few years back.

All of this is just really new to me. I have been looking at some home collection kits that you can mail in to labs and some that even process at home (like the one I found on this site actually through optimum health resource labs) and you can see results in 10 minutes. Maybe this would let me know if I am intolerant to gluten? My Dr. is an imbisil and I don't want to waste my time going to him because he doesn't listen to me. I am hypothyroid and have been officially diaganosed with that since 2005. With my current Dr. I had to go back 3 differenttimes to figure out why I was so completely tired all the time and finally found out i was in recovery from mono back in february, they took so long they missed me being in the active stage of it when i was complaining of sleeping so much. *sigh* I just wish Dr.'s would listen when a patient knows something isn't right with their bodies and take appropriate actions to help. They are so concernced with making money they could care less if someone is sick or needs help. (excuse my rant!)

I'll leave my long post to that for now. I'd really appreciate any inpuit that anyone could give me!!

Thanks so much,

Sara :-)


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



Celiac.com Sponsor (A8-M):



MsModelSara Rookie

I forgot to add that I have on and off anemia and I also found out about a Vit. D deficiency when I found out about the mono. Come to find out I was tested for that last year and was supposed to be taking 1,000 IU daily since then and was NEVER told until I asked to be tested for D deficiency because in some people it makes you tired. So I had to get a script for 50,000 IU to take once a week for a month and now just once a month.

It's hard to find a good Dr that accepts Tricare.... Anyone know of any good ones in Central VA???

MySuicidalTurtle Enthusiast

It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.

MsModelSara Rookie
It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.

thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.

ravenwoodglass Mentor
thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.

Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.

Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.

  • 1 year later...
MsModelSara Rookie

Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.

Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.

Ravenwoodglass,

I just now saw that you wrote on here :-). I just sent you a message! A lot has gone on since I originally wrote this post. I have had negative blood tests for Celiac, but it was positive for Hashimoto's Thyroiditis. Stool and gene panel from EnteroLab dx'd me as having active gluten sensitivity that can be more severe due to a double copy of a gluten sensitivity gene (HLA-DQB1 Molecular analysis, Allele 1 0602 and HLA-DQB1 Molecular analysis, Allele 2 0602....Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) ), and immunologic reaction to casein as well as gluten. I do not have either of the two classic "celiac" genes but after reading many of people's stories, those aren't needed to develop Celiac...

I'm still searching and learning, trying to see what is what and trying to figure out the gluten-free diet and see if I can find a dr to retest me for celiac and such. I'm not sure that I'm negative for real. I had the same voice in my head telling me something wasn't right when I set out years ago for my thyroid problem, and it took me 7 years to get my autoimmune dx for that! I didn't give up because I know my body and knew something wasn't right.

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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,861
    • Most Online (within 30 mins)
      7,748

    MEK5
    Newest Member
    MEK5
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.