Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Confused If Im Celiac Or Not


Constipatedcyclist

Recommended Posts

Constipatedcyclist Newbie

For three years or more i have been having health issues and im trying to figure out what they are from.

The only thing that has helped me get better so far is diet.

I was really bad when all this started and have been alot better with a gluten free diet but i cant say im back to myself. And infact recently things have taken a turn for the worse again.

Current symptoms:

Poor energy, fatigued.

Very high anxiety.

Insomnia.

loss of padding in hands and on my heels?? hurts sometimes when i walk.

cramping muscles. Especially hands and upper stomach but all of stomach aswell.

muscle twitches

Loss of sensation. not completely but like my skin all over is abit numb, mostly hands and my stomach and back.

Im easily startled, seem like my body is overreacting to stress.

Just before xmas this year i had a bakery that i know contain gluten and within an hour i felt like a knot in my stomach around my belly button. Ever since things have taken a turn for the worse. I could also feel like i had tiny wounds that stung alittle in my colon and i got brainfogged after every meal when i had this wound feeling? Its now dissapeared and so has the brainfog. I was also eating gluten during xmas by misstake, a very small amount but it was there none the less.

So its been approx 1 month of beeing completely gluten free again but if anything im getting worse.

I also have lost some sensativity in my genitals aswell.

The only thing i have come to conclude is that im not sure if i can eat myself to perfect health but maybe my diet is still containing gluten i dunno. But i do know i can eat myself to 100% poor health within a couple of days.

I have done 2 biopsies where nothing was found they could not find any inflamation (i was thinking chrons earlier) and they could not find any damage to villi. Both biopses were taken when i had been of gluten for more than 6 months and was feeling better so that could perhaps scew the results? I do not dare to take the gluten challenge and redo the biopsy.

Could all of these symptoms be from Celiac or is there more to it?

I have had some hormones issues previously and vitamin d shortage but thats all they could find and has since popped back into range. Hormones by themselves after beeing of gluten and vitD after popping some pills.

Any ideas as to what further testing could be done? What minerals and vitamin should one check for?

Thanks for your respone!

Bj


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

Of course the tests will be negative after several months off gluten. Even two-three weeks off gluten can cause negative biopsies.

mushroom Proficient

You should check iron/ferritin, potassium, magnesium, calcium, zinc; Vit. B12, folate, A, E and K at the very least.

Constipatedcyclist Newbie

You should check iron/ferritin, potassium, magnesium, calcium, zinc; Vit. B12, folate, A, E and K at the very least.

Thanks for replies. I did not know just a few weeks can make the biopsy negative. If i would have known i would never have gone through these horrible colonoscopies. I felt really drained after those laxatives and i wasent all that fond of the tube down my throat either :)

So thats the short list of tests to take is there a longer one? At this point im just done doing a few labs here and there i wanna do it all at once and make sure theres nothing left out.

Thank you, appreciated!

ravenwoodglass Mentor

You might also want to get a celiac panel run. It is possible you are getting cross contamination somewhere and that may let you know if your still making antibodies. You may have an additonal intolerance. Soy and dairy being the most common. You may want to eliminate them and see if that makes a difference. Are you eating mostly whole unprocessed foods? If your eating a lot of processed gluten-free foods there may be something in them that you are not tolerating. You especially want to avoid codex wheat starch if that is something commonly used where you are.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,187
    • Most Online (within 30 mins)
      7,748

    Jackie49
    Newest Member
    Jackie49
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...