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

Very Curious


danikali

Recommended Posts

danikali Enthusiast

I have not taken any tests yet, and I am going to a GI in about a week now, but I want to make sure that I really could be right thinking I have Celiac Disease. So I have a few questions and if anyone could answer them in any way, I would soooooooo appreciate it!!!!!

1. I alternate between constipation and diarrhea, but I have constipation A LOT MORE. Most of the time. Also, I am very late on getting my menstural cycle. I know that diarrhea could be a sign of malnutrition and therefore make a woman miss her menstural cycle, but could constipation also be a sign of malnutrition? (I am not pregnant, I took 3 tests already that are supposed to be 99% accurate, and I know what it feels like to be pregnant; I know that I am not.)

2. Are there any MAJOR signs of celiac disease? A symptom that tells you, you probably have it? (Specifically one of the following) I have a lot of symptoms, but I'm so scared that it could be something more serious. Mine are:

Constipation

Bloating

Bad heartburn, especially when laying down

back aches, come and go

leg cramps, especially when walking

knee pains

extreme fatigue at times (where I am too tired to stand up practically)

Foul Gas

Late menstural cycle

Black and blue marks on legs

lazy feeling in arms

Irritable

Migrane headaches, on and off

3. Also, I was off of gluten for about 3 months (except hidden gluten I didn't know about) and casein and I felt a lot better more often. Now I am back on it everyday because I know I am going to be tested soon. Now, there are always symptoms, sometimes light, and sometimes strong. With celiac, do the symptoms come and go, more severe and then less at other times? Or would every symptom be there everytime all day long? Also, my back aches seem to get worse when I am sitting in a chair or laying down. And when I am walking, it gets better. Would this be a sign of something else?

4. Are the signs of Celiac disease and just gluten intolerant (no celiac) the same, causing the same symptoms? Or are they different? And is it possible for my doctor to check for Celiac disease AND gluten intolerance, or do doctors just test for celiac? And if so, and my tests come back negative, where could I find gluten intolerant testing?

If anyone could help me in any way, I would SOOOOO appreciate it. Please help me! I feel like I'm going to drive myself insane until the doctors appointment! Or maybe until I finally know what is wrong with me!


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



Celiac.com Sponsor (A8-M):



FaithInScienceToo Contributor

Hi -

I kinda chuckled inside when I read your post...don't worry, I also have great empathy for you!

Anyway....I chuckled because I thought, "this person is on the right track...and should not worry!...she/he has a doc appt in one week..."

JUST BE SURE TO GET A FULL "celiac disease blood panel" done...tell you doc to order the FULL SCREEN.

If your antibodies come back positive, or even 'equivocal,' I say go off gluten again...and forget about a biopsy...unless your doc thinks you may have some other problem.

AND, if you find that you still have 'stomach problems,' and want to know if casein is causing your continued problems, go off casein one month later, to see if the rest of your problems go away...

Just be sure to keep in mind that it takes time for ALL of those peptides to get out of your system...and you will have withdrawal problems from casein elimination...I have just recently gone off of casein, have withdrawal symptoms, and have been reading a lot about it...It, and gluten peptides, can take a long time to clear out.

This is why I suggest that you go off gluten first...if all of your problems resolve, you may not need to give up dairy. Plus, withdrawl symptoms from casein could very well complicate your ability to know if having gone gluten-free is helping you.

If you have the funds to do add'l testing on your own, to find out if you have casein antibodies, I suggest ordering Enterolab's stool test - for gluten and casein, and also egg antibodies...and I suggest that you also do their cheek swab gene test, to complete your puzzle.

Anyway...keep eating gluten, until you get your tests done...

Best wishes and welcome!

Gina

bluelotus Contributor

I can't answer all your questions, but your symptoms sound along the lines of celiac disease. There was a thread recently where people listed all their symptoms. Do a search for it if you are curious. My symptoms would also fluctuate (while eating gluten constantly), which I think is why it takes so many people a long time to get dxd. If symptoms aren't consistent, its hard to pin down the culprit.

danikali Enthusiast

Thank you so much for trying to help. I did also order the "gluten sensitivity stool panel complete" from enterolab. This is supposed to check for reaction of the immune system to gluten in the diet; Stool Test for Tissue Transglutaminase (Gluten-induced reaction of the immune system to one of the body's important enzymes, tissue transglutaminase, causing an autoimmune reaction that may damage the intestine and other tissues of the body, and may be related to the development of other autoimmune diseases); Stool Test for Intestinal Nutrient Malabsorption/Intestinal Damage (Malabsorption of dietary nutrients caused by damage of the small intestine, or sometimes lack of enzyme production by the pancreas).

I hope this was the right test to get to find out if I have a gluten intolerance. Does anybody know about these tests? And even if I don't have celiac, but do have some kind of gluten intolerance, would these tests show up positive?

Rachel--24 Collaborator

Enterolab results will show positive if you are gluten sensitive or have celiac. Did you order the gene test as well? That would give you a better idea if you have celiac or not. The Enterolab tests are good..it looks like you've done your homework so don't worry. Its good that you're also getting the bloodtests as well. I dont know how long you've been eating gluten again but if it hasnt been long enough the bloodtests may be negative. Enterolab are suppossed to be more sensitive so if theres a problem it should show up in the test.

danikali Enthusiast

No, I didn't get the gene test. I figured that because I am going to the GI, she will be able to see if I am specifically a Celiac, but in case she does not get a positive for celiac, I wanted to go through enterolab to see if I am gluten intolerant. Am I wrong?

I've been eating gluten for the past 2 months almost. Before that, I was on it, then off, then on, and so on. (Because I didn't have a test done, I felt like I had to "make sure" I was intolerant to gluten, so I would eat it to get a reaction. And I always would, but then I also found myself getting very sick sometimes, trying not to eat any gluten at all. Though I later found out it's in more things that I thought!)

Anyway, all I want is "proof" of something somewhere, because I can't believe it 100% if I don't get that, do you know what I mean? I really am driving myself crazy these days! haha.....it's actually not funny!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,412
    • Most Online (within 30 mins)
      7,748

    duddridge
    Newest Member
    duddridge
    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

    • Wheatwacked
      Studies have shown that individuals with canker sores tend to have lower levels of vitamin D in their blood compared to those without the condition. This suggests that vitamin D deficiency could be a risk factor for developing canker sores.  Vitamin D deficiency is very common in Celiac Disease.
    • Wheatwacked
      So Sunday night after writing that post about Losartan was causing weakness in my hips I decided to stop taking it, even if against medical advice.  When I was 12 years old I read a book called The First Hundred Years of Surgery.  It gave me insight to the politics, financials and egos of the world.  My take-away at the time was: one day I'm going to have to find my own cure. Sunday 6 am was 134/60 after Losartan dose Sat nignt. Monday 8 am BP was 118/56 no Losartan sunday night. Tuesday (today) 6 am BP was 126/64. Getting up from the floor is improved. Brain fog improved, vision less foggy, cold feet not as cold, and not feeling like I need to go back to sleep almost as soon as I wake up. Doctors are required to follow protocols, not listen to patients.  I say I hurt and they say "that's not common, the medicine protects you, is good for you, keep taking it"  Not unlike Celiac Disease.  You eat gluten, get sick and your blood and biopsy says you do not have Celiac Disease, you are not sick.  Keep eating wheat because it is good for you. Despite what the doctors say, it appears ACE inhibiters and ARB BP meds are NOT good for me.  One had me considering a walker would be good (it had me bent over).  Standing straight once I stopped.  One had me thinking a walker was in my future (lost quadracept stability in knees, Lisinoprol caused an inquinal hernia, something caused a blind spot in my right eye and cataracts in both.  Amlodipine dehydrated me so I could not wear contacts, Losartan I was thinking a walker or wheelchair is immenent, hips and lower back getter weaker.  My only vision issue at 70 was increasing nearsighted and farsighted; until we attempted to control my BP. I am not advocating ignoring medical advice, but sometimes I know what is better for me than what the protocols say.  After all, I live in this body.  Doctors only see me for 20 minutes every 3 months. My current list: Medications: Prednisolone 2.5 mg 6 am Clonidine 0.1 mg 6 am, 2pm, 10 pm Rosuvastatin 20 mg evening meal Glimiperide 2 mg morning meal, evening meal Nicotinic Acid (Niacin) 6 am, 2 pm, 10 pm Liquid Iodine 600 mcg once a day in a drink.   Vitamins:  Several times a week. B1 250 mg, B2 100 mg, B3 500 mg, B5 500 mg, B6 100 mg, B12 1 mg, DHEA 100 mg, vitamin D 250 mcg, vitamin C 500 mg, CoQ10 200 mg, Selenium 200 mcg Taurine 500 mg,
    • Stephanie Wakeman
      Wow, thank you for share Elisal!  We do need to stay focused on the fact we are so much healthier without wheat and gluten as hard as it is! I've learned to love rice and almond flour based sweets and enjoy the corn and plantain chips as my go to salty snacks! 
    • Pablohoyasaxa
      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
×
×
  • Create New...