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

Advice Please :-)


redheadednut

Recommended Posts

redheadednut Newbie

Helllllllo!

Over the past couple of years, I've had freq stomach aches, diarrhea, 3-5 BM/day, excessive gas, bloating, mouth sores, etc. I usually have a BM right after I eat or sometimes even before I have finished my meal. I finally decided to seek help from a doctor this summer (before my health insurance runs out when I graduate from college this spring!). The doctor at my school referred me to a GI specialist due to my symptoms coupled with unexplained anemia. The blood panel showed "elevated anti sprue AB." As a result of that test, I was scheduled for an endoscopy. The endoscopy and biopsy both came back normal. I won't be able to talk with my GI doctor until my appointment in mid November (I received my endoscopy results in the mail), but I'm pretty sure I'll be stuck with the typical IBS diagnosis.

I am a little torn between what I should do since I have read on here that it is possible that the endoscopy/biopsy may have missed damage. Considering the possible ramifications that can come in the future for someone with celiac disease who doesn't follow a gluten-free, in addition to my current anemia, I am wondering if I should give the gluten-free diet a whirl. Although, I am hesitent to do so before I see my GI doctor again in case she wants to do further tests. I also kind of feel as though I would be giving myself a self-diagnosis/disrepecting her by doing so. AHHHHHHHHHH! I'm just sick of feeling yucky and getting a diagnosis/help is proving to be an incredibly long process! Do any of you have any advice for me?!

Thanks!

A


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

I would definitely try the diet. Which blood tests were done? Some are very specific. Also, a biopsy can rule celiac in but it can't rule celiac out. If there is sporadic damage they can easily miss it and if it is in beginning stages you may not have damage yet.

AmandaD Community Regular

I would agree with Kaiti and make sure you had the TTG test done...do you know if celiac sprue runs in your family? Another option would be to have the HLA gene test actually done - you could ask your g.i. about this - for instance, we may do this for all three of our kids because then we'll really know whether or not they will develop sprue and whether or not we should be testing them every three years with the ttg test (i'm a biopsy-confirmed celiac myself).

(testing relatives every three years if they're related to a first-degree biopsy confirmed celiac is the newest medical recommendation)

my g.i also mentioned that since my bloodwork was positive, if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay.

just some things to discuss with your doc...amanda

I would definitely try the diet. Which blood tests were done? Some are very specific. Also, a biopsy can rule celiac in but it can't rule celiac out. If there is sporadic damage they can easily miss it and if it is in beginning stages you may not have damage yet.

<{POST_SNAPBACK}>

Nevadan Contributor
Helllllllo!

Do any of you have any advice for me?!

Thanks!

A

<{POST_SNAPBACK}>

Hello A,

Since you have anemia, I would recommend getting a bone density test done to check for osteoporsis. Both are related to gluten sensitivity.

George

Guest BellyTimber

"if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay"

3 months - that surely is too soon to be final

VydorScope Proficient

Odviously talk to your doctor before you take any adivce... not that docs are perfect, but they have your tests, and hisitory, and other data we do not. :)

BUT, if your celiac disease blood test is POSTIVE, then go gluten-free for life and forget futher testing. You have celiac disease. Its fiarly simple. :)

I created a thread a whiel go expliaing how the bisopy is NEVER NEGATIVE. Its only non-postive. Thats a big big difference. Non-postive tells you nothing for sure, while negative would be conclusive. Only a POSTIVE biosopy tells you anything in the case of the celiac disease test.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • 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.