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

I Hope I'm Doing The Right Thing!

VitaminDGirl

Recommended Posts

VitaminDGirl Apprentice
VitaminDGirl
Posted

Hi. I was here several weeks ago.

I'd had an off the charts saliva test saying I'm highly intolerant (dr. said 'allergic') to gluten.

Soooo...I decided I just had to know if I'm celiac or not.

Went to GI dr.

He ordered bloodwork, unsure of validity of saliva testing.

All bloodwork negative, including bloodwork of the same test I took by saliva.

He even called the lab that does the saliva, who told him a false positive could happen if one has parasites.

Did a poo test.

Sent it to the lab.

Parasite free.

Decide to do the biopsy, though GI dr. highly doubts celiac.

It was scheduled for yesterday.

I was sick and canceled.

I have had pain in my feet and legs and back that suddenly onset (first in feet) a year ago. The only tests of allll my xrays, nearly full body MRIs, every kind of bloodwork you can imagine....

They only could find 'for certain': Vitamin D deficiency, which I'm now recovered from.

and now this saliva test.

I'm tired of the pain. I don't feel I can wait any longer to do the test.

Tonight I decided I'm gluten-free.

My 7 year old has awful constipation and ezcema. She is adopted. (saying this b/c we are not blood related to think of a link between us for intolerance or celiac).

Her bloodwork was negative.

Thinking of taking her off without a biopsy.

Thanks for listening and for your support.

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

Celiac.com Sponsor (A8-M):


Kay DH Apprentice
Kay DH
Posted

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

Frances03 Enthusiast
Frances03
Posted

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

Kay--thanks a million for this post. How encouraging to hear. I'm so glad to hear that in spite of all the testing, you took the plunge and are noticing such positive results. I appreciate you taking the time to share your story with me. I'm sure I'll see you around the site.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Hello, fellow homeschooling Mama! I am homeschooling 4 of my own. congrats on being preggo with #4!

I very much appreciate your comments and will be taking them into prayerful consideration.

Thank you for sharing your struggle and story as well.

Hope to see you around here.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

Skylark Collaborator
Skylark
Posted

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Depends on how sick gluten makes you. I self-diagnosed have no problems at all turning down gluten or explaining myself, as I'm sick for a couple days after eating traces of it. I just tell people I'm celiac. You say what you need to stay away from poison! Nobody has my medical records but me and my doctor, so how would they know otherwise? Besides, doctors say I probably am celiac and I've had three different doctors tell me that there is no sense breaking a strict gluten-free diet that's maintaining my health for a challenge with a series of somewhat unreliable tests.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

Just keep in mind that false negatives on the biopsy are not uncommon. Do try the diet strictly after the biopsy is done. Your body does know the answer.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,494
    • Most Online (within 30 mins)
      7,748
    Leanne41
    Newest Member
    Leanne41
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Oh and yes, thanks, other than being permanently RAVENOUS and not yet putting on weight, I am feeling pretty good. I jog, do yoga, today cycled 12km to a food market then to another place to get my fish, then my gluten-free bread... My life is All about food!;( But I shld prob. be less active as obv is keeping the pounds off... And having some muscle makes me feel less depressed with my skeletal appearance.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      A big Thank you! To all who replied. V informative and interesting. Re VitD, mine was always good, between 60 and 70. Then on the Bone Support Supplements by Natures Plus it jumped to 90, 110 and then over that! I was getting to be VitD toxic... As the supps had 25mcg VitD, which was obviously enough to tip me over... I always go out with shorts whwnever the sun pops out to make sure I get it naturally. They say the activated form of D3 ie. Cholecalciferol is used as the strongest rat poison that exists! I also only eat wild caught salmon, only organic, no sugar, bad fats etc etc.... In fact I am 50 yet people think am 35 and am sure is partly genetic but mostly diet(!). But is Not helpful when I need my GP to take my issues seriously.  Interesting about the oestrogen theory! Will research further, thanks! And thank you to you who suggested the thiamine B1 deficiency, it is only a small possibility as I have Loads of B1 in my diet, but is an interesting theory and thiaminase is smthg I will look into! Also thank you to the London person who sent me a VitA test link. I was told these home kits are not worth thr money;( In fact I plan to go abroad where you get every micro and macronutrient as well as all minerals and vita checked for 350euros! Is absolutely crazy London has nothing like that. I did a hair mineral test here, which was interesting, and even that they send off to a lab in Florida!
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      @Celiac50, Other than finding foods that make your tummy happy, are you feeling well?  No other symptoms?  That's great progress! You don't mention vitamin D status.  Vitamin D deficiency in the UK has been estimated to be as high as 60% of the population. Celiac Disease causes depleted oral vitamin D from malabsorption.  Most people do not get enough UV light to activate skin creation of vitamin D. Vitamin D supplementation in the United Kingdom: time for change Vitamin D Is Not as Toxic as Was Once Thought It looks like you are going to have to try changing out food by food, until you find the one.  Start with the supplements.      Wild caught vs. farm raised?  Sometimes it is just a subtIe change that can do it. I know that switching to grass fed milk has been good for me.
    • RMJ
      7yo struggling!

      By RMJ · Posted

      The incidence of autoimmune diseases in general, including celiac disease, has increased.  There are various theories as to why. The environment we live in, diet we eat, toxins we’re exposed to, stress levels, activity levels and infectious diseases to which we are exposed are all quite different now. A robust immune system that would have been an advantage thousands of years ago may be a bit too robust for modern life.
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      @Celiac50, Most Celiac patients with a Marsh score as high as yours are more likely to suffer from fat malabsorption and deficiency in fat soluble vitamins, Vitamins A, D, E, and K.   Vitamin A toxicity does not cause Celiac disease.  Your Vitamin A toxicity was probably developed after your diagnosis and subsequent over-supplementation.  Fish contains thiaminases, chemical compounds that destroy thiamine, Vitamin B 1, making the thiamine unusable.  Excessive intake of foods containing thiaminases can precipitate low thiamine.   Low thiamine can also be a result of bacterial or yeast infections.  A high carbohydrate diet encourages Candida and bacterial infections.  High carbohydrate diets promote SIBO and Candida because they feed on the excess carbohydrates and suppress the beneficial bacteria.  Other types of bacteria can take advantage of this and set up housekeeping outside the gastrointestinal tract, including bacterial vaginosis. Thiamine Vitamin B 1 can alter the microbiome.  Thiamine has been shown to suppress Candida, SIBO, and other bacterial and viral infections, and favor the growth of beneficial bacteria.  My SIBO cleared once I supplemented with Benfotiamine, a form of thiamine that has been shown to promote intestinal healing, and a B Complex.  Thiamine works in concert with the other B vitamins and magnesium. Thiamine helps to lower histamine levels by calming mast cells that release histamine at the slightest provocation.   Following the Autoimmune Protocol diet also helped immensely in getting my digestive system calmed and able to tolerate more foods. Have you discussed with your doctor and dietician supplementing essential B vitamins while healing?  What is your Vitamin D level?  Vitamin D helps calm the immune system.  
×
×
  • 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.