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 Celiac.com!
    eNewsletter
    Donate

Looking For Advice

kpyoung24

Recommended Posts

kpyoung24 Rookie
kpyoung24
Posted

hey everyone! here's my dilemma... about 4 years ago i saw a gi doc after years of gi problems and months of trips to the hospital for SEVERE vomiting and d, i was very low in potassium, they got my levels up with an iv and sent me home. the gi did an egd and colonoscopy... i was diagnosed with IBS and duodenitis(which is another word for damaged villi according to my daughters gi), anyway my new doc tested me for celiac given my daughters positive tTG test, he ran a gliadin and ema test, nurse called today and said it was all negative, what now??????

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dbmamaz Explorer
dbmamaz
Posted

From what i've read around here, the standard response is - try the diet anyways. You dont need a doctor's orders to quit gluten! Go off for 6 weeks, then try going back on and see how you feel. Many of us here did it without testing, and were amazed at how much better we felt. You really dont have much to lose, except a few weeks of eating bread and stuff.

Link to comment
Share on other sites
Darn210 Enthusiast
Darn210
Posted

I would try the diet. You have to do all the research, shopping and cooking for your daughter, anyway. I don't want to make light of that . . . that will entail a lot of work in the beginning. However, for you to go gluten-free at the same time won't be that much additional effort.

Link to comment
Share on other sites
kpyoung24 Rookie
kpyoung24
  • Author
Posted
I would try the diet. You have to do all the research, shopping and cooking for your daughter, anyway. I don't want to make light of that . . . that will entail a lot of work in the beginning. However, for you to go gluten-free at the same time won't be that much additional effort.

thanks for the advice everyone! is there such a thing as negative blood work and positive biopsy?? i ask because my daughter's gi said that there is no difference between "duodenitis", which i have been diagnosed with, and damaged/blunted villi. any info is appreciated!!!

Link to comment
Share on other sites
aikiducky Apprentice
aikiducky
Posted

A negative bloodwork/positive biopsy combination is actually quite common in adults. Your doctor might be willing to diagnose you without a repeat endoscopy?

Pauliina

Link to comment
Share on other sites
lightening16 Rookie
lightening16
Posted

Hello

I am not expert but from what I have read on here, there are lots of people that have had similar things happen. The blood test are not perfect. Some sites they are are 92% effective but if you look on the enterolab site they discuss it furthur and it looks like depending on the person then the results can be as 30% accuracy.

I had negative blood test but a positive response to the diet. Did a gluten challenge for 2 weeks and know that I have a problem with gluten. I am supposed to go see a GI but that will take half a year. I am not waiting to go gluten free.

They say that the biopsy is the "gold standard"... not the blood test.

Good luck

Link to comment
Share on other sites
cruelshoes Enthusiast
cruelshoes
Posted

If it were me, I would try the diet anyway. It can happen for people to have negative bloodwork and positive biopsy results. Here is a link that may be of interest to you:

Open Original Shared Link

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative

This means that sometimes if your villi are still in the early stages of damage, your bloodwork may be negative - for now. Negative bloodwork does not mean you don't have celiac disease. Did they take samples during your endoscopy? If so, I would try to get ahold of the pathology report to see what the findings were.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kpyoung24 Rookie
kpyoung24
  • Author
Posted

thank you everyone for your very helpful replies!! everyone here is so supportive!! i looked into that link and the research that is sighted there is really interesting, thx for the tip! im going to call my old gi tomorrow and request a copy of my records, hopefully that will help. my current doctor is mailing a copy of my lab results to me as well. hopefully i can put all the pieces together. i just know that I've got ALL the symptoms, including all the yucky gi stuff, the infertility issues, an unexplained rash on both elbows, and the diagnosis of hypothyroidism about 4 years ago. i just want answers so i can start feeling better. with any luck I'll get some, even if i don't i think I'll try the diet anyway. thx again everyone!! im sure you haven't seen the last of me...lol!

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,090
    • Most Online (within 30 mins)
      7,748
    Nicole K
    Newest Member
    Nicole K
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Waiting for urgent referral.

      By cristiana · Posted

      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      Celiac Dietician

      By Denise I · Posted

      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
×
×
  • Create New...