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

Should I Be Tested?


kdickinson

Recommended Posts

kdickinson Rookie

Alright, so here's my story. My name is Kyle, I'm 24, 5'3", shortest guy in my family by about 5" and I think I may have celiac disease/gluten sensitivity. (Not real sure of the difference) Anywho, here's what's up.(This may get a bit nasty, I do apologise)

I have had these bouts with heart palpitations for years now, more recently, last couple of years, they've gotten worse. I can go months without having any, but then boom, I have over 5,000 in a day(literally, wore a holter monitor, doc said they were just Pvcs and pacs. Stinkin annoying though.) I've had prostate problems, colon problems, I've had polyps, hemmroids, blood in me stools, generally pretty fatigued, not severe or anything, but I just don't seem to have the energy of other people my age. Also I've had ADD since I was a child, used to have OCD, but has mostly cleared up. And here lately no matter what I eat I always just get to feeling sick, overly full, and just not good, like I used to. I mean I will enjoy the food, but I always feel drained and crappy afterwards, no matter what it is. not a pleasent experience for someone who likes food as much as I! Also I have... anal seepage problems. I've had it since I can remember. Never told anyone about it because it's so darn embarrasing, but nothing I do seems to make it better. Sorry about that. Also, when it comes to short term memory. I am the WORST in the world. I can't remember anything. I know that sounds random, but I've seen it before crop up as symptoms.

ANYWHO. From january to febeuary, I went on this Daniel Fast thing with my church, which is where you pretty much just eat fruits and veggies, no processed food, and very minimal cooking. Needless to say I felt SO good during that time, more than I have in a LONG time, and ever since that time, it seems as though it's gotten worse when I do eat regular food. I've never had anemia, and my family thinks I'm a hypocondriac for "having" all this stuff at such a young age. Which I would TOTALLY agree with, other than the fact that I in fact have had all the stuff listed above. So I'm hesitant to get tested, when I don't have any "Severe, or classic" signs, because that would be one more thing to add to their list.

What do you guys think?


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

I think you have found the right place and you should be very hopeful about your future health! All of the things you describe are very, very common for those with Celiac/Gluten Intolerance. It is really horrifying when your own family thinks you are hypochondriac. I was there too. Nevermind what people say. You need to find out what is going on with your health and I think you figured out a big key-Gluten makes you sick. Now you have to decide if you want the testing which is not always accurate. You could ask your Dr. to do the full Celiac panel if you are still eating gluten that is. If you are not eating gluten up until the time of testing you will test negative. Many of us were not able to get diagnosed through testing or chose not to. It is totally up to you. You could try for the blood testing and endoscopy if you feel you need a firm diagnosis. Malabsorption issues can also be detected through vitamin level blood tests. It is very common for us to be deficient in A E D K, iron, zinc, magnesium, calcium, all the B vitamins, folate and B 12. Thyroid problems are very common too.

You certainly have enough symptoms to warrant either getting tested or giving the diet a good strict try for several months. However, it is very difficult to go back on gluten once you have gone off of it. Should you decide to be tested in the future it could be a brutal 2 months of eating the equivalent of 3 to 4 slices of bread a day and then you still may not get a positive. Some people are Gluten intolerant and will never test positive. Yet they are as symptomatic as a person with the diagnosis of Celiac disease.

Welcome to the forum. I'm sure you get some other answers to help you make your decision, but in the end it is up to you and the good thing is you don't have to have a prescription to eat gluten free. There are several threads recently on here where people are struggling with the same decision. You may find them helpful to read through. I decided the result would be the same if I tested or if I didn't. I cannot eat Gluten without getting very sick. I hope this is the end of your long struggle to find out what is going on with your body. Take care and I hope you feel great really soon!

ravenwoodglass Mentor

Welcome to the board. The previous poster gave such good advice I really don't have much to add. If you do decide to get tested give yourself a good 2 months back on gluten before you test but be prepared for a false negative. When your done with testing do give the diet a good strict try for a bit and see if it helps.

mushroom Proficient

Well, I would say you do have classic signs of gluten intolerance. If you have been back on gluten for a month, you would need to do another month of gluten eating before you would likely test positive. But even then, as eatmeat says, it is possible to test negative for celiac if you are in fact non-celiac gluten intolerant :( , meaning that you have all the same symptoms but don't get the diagnosis. :o And you also have to decide who the diagnosis is for, you or your family? If your sole goal is to get better than you can go gluten free right now and forget about the testing. If you have to convince family of the legitimacy of your symptoms you might want to try for the diagnosis. But I think if I were you I wouldn't tell them about it unless it were positive, otherwise you would just give them more ammunition :rolleyes:

Oh, and when you get the nutrient testing done, include Vitamin D for sure; this is the one that is important to prevent osteoporosis.

kdickinson Rookie

Thanks for the replies. I have an appointment scheduled for next week with a general sergeon in town about a colonoscopy I'm due for.(closest GI is hour and a half away) But he does testing and stuff, and colonoscopies and endoscopies. I'm gonna talk to him about getting tested, and see the timeframe.. I mean I have been eating regular ol' food since the end of January, so I'm definitely go for testing. I'm just ready to give this a whirl, cuz this gut pain is getting annoying. And getting worse. So we'll see.

txplowgirl Enthusiast

Make sure you get the endoscopy, the colonosopy can't diagnose Celiac.

kdickinson Rookie

Ok I've got a dilemma. I could get into the general surgeon on thursday, here in town, or wait till next Tuesday and get into the GI in the city about an hour away. What would you guys recommend? I wanna get it over with, but I want a doc I can trust. Have any of you guys had experience with general surgeons that do endoscopies? And how were they?


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

You might want to start a new post for this question if you still need an answer. I don't know what I would do as I have no experience with either kind of Dr.

Archived

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

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

    • Total Members
      132,799
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • RMJ
      The normal ranges can vary for the tissue transglutaminase and gliadin antibody celiac tests because the units aren’t absolute.  Could you please tell us what the normal ranges are for the laboratory used? If her tissue transglutaminase results are 10-fold above the normal range some would diagnose her on that alone.  Endomysial antibody ranges are more standardized, and a titer of 1:5 would usually be normal.  Might that be the normal range and not her result?  Her total immunoglobulin A is normal for her age. (This is tested because if low, then the other IgA tests might not be valid).
    • Samanthaeileen1
      Hello there! New to celiac community, although I have lots of family in it.  My two year old was just diagnosed with celiac disease based on symptoms and bloodwork.  symptoms (swollen belly, stomach hurting, gagging all the time, regular small vomit, fatigue, irritability, bum hurting, etc) she got tests at 18 months and her bloodwork was normal. She just got tested again at 2 1/2  because her symptoms were getting worse and these were her results :   Tissue Transglutaminase Ab, IgA 58.8 Unit/mL (High) Endomysial Antibody IgA Titer 1:5 titer (Abnormal)   Gliadin Antibody IgA < 1.0 Unit/mL Gliadin Antibody IgG 8.5 Unit/mL Immunoglobulin A 66 mg/dL Her regular pediatrician diagnosed her with celiac and told us to put her on the strict gluten free diet and that we wouldn’t do an endoscopy since it was so positive and she is so little (26lbs and two years old). I’m honestly happy with this decision, but my family is saying I should push and get an endoscopy for her. It just seems unnecessary and an endoscopy has its own risks that make me nervous. I’m certain she has celiac especially with it running in mine and my husbands family. We are now thinking of testing ourselves and our 5 year old as well.  anyways what would y’all recommend though? Should we ask for an endoscopy and a GI referral? (We are moving soon in 5 months so I think that’s part of why she didn’t refer us to GI)    
    • olivia11
      This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense.   You are not confusing yourself  you have got it right. Thiamax (TTFD) plus a B-complex, and if you want benfotiamine, the Life Extension formula covers that at ~100 mg.
    • olivia11
      High fiber can definitely cause sudden GI distress especially if it’s a new addition but accidental gluten exposure can feel similar. Keeping a simple food/symptom log and introducing new gluten-free foods one at a time can really help you spot the pattern. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense.
    • xxnonamexx
      sorry a bit confused so I should take my B complex along with Objective Nutrients Thiamax for TTFD but what about a Benfotiamine to take. The Life extensions contains Benfotiamine and Thiamine together or im confusing myself. I am trying to see if I take Thiamax what should I take for Benfotiamine. Thanks EDITING after further research I see ones water soluble ones fat soluble. So I guess 100MG as you suggested of Life Extension contains Benfotiamine and Thiamine Hydrochloride. and the Objective Nutrients Thiamax contains TTFD.     would work for me.
×
×
  • 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.