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

Help Please. I Am Sooo Confused!

Guest ShannonL

By Guest ShannonL
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

Guest ShannonL
Guest ShannonL
Posted

Ok here goes. I was dx as Celiac 10/01. Immediatly went on the diet and did well. No more cramping/diarrhea, etc. My IGG was 88. My IGA was 21. My pathology report doesnt say too much. My doctors said I have Celiac. THEN 05/03 my tests came back normal (on gluten-free diet). Then I switched dr's and she looked at my files and said that I dont have celiacs I have a wheat allergy. Therefore....my stubborn self eats gluten all the time. My 8mo dd has severe milk/soy and now suspected wheat allergy so when I spoke to her GI about her case I meantioned my wheat allergy and he was concerned for my health. Now he wants to see my chart. He is a sweet man! Anyway. Is it possible to have celiac and biopsy not be too bad...says villa is uniform and intact. I have a terrible habit of eating wheat and taking imodium since it is only an allergic reaction (I KNOW I AM CRAZY!) Thanks...I am so frustrated and worried that I have really hurt myself.

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

If you tested positive for Celiac, then YOU HAVE CELIAC! Your second test, while gluten free, would come back negative because if you don't have gluten in your system, the antibodies won't show up. YOu have to be eating gluten regularly for a test to show up positive. It is absolutely possible to have your biopsy show no damage and still have Celiac.

Carriefaith Enthusiast
Carriefaith
Posted

When you are on a gluten-free diet, results from celiac disease tests are likely to be false negative. Meaning the gluten-free diet is working! I persoannly would go with the opion of the doctor that orginally treated you and tested you. I would also ask for allergy tests such as a skin prick test or an allergy blood test.

Guhlia Rising Star
Guhlia
Posted

I'm not trying to scare you, but perhaps this post will give you some insight. I believe Evie went through what you're currently going through.

Open Original Shared Link

Ursa Major Collaborator
Ursa Major
Posted

Shannon, you really need to be 100% gluten-free, or you're going to make yourself very ill in the long run. The doctor who told you that it's only a wheat allergy didn't know what she was talking about. Your bloodwork clearly shows it's celiac disease, and your original diagnosis was correct.

Since celiac disease is genetic, your little one probably has celiac disease as well, and needs to be gluten-free, too.

Trust me, I am suffering from a lot of problems because of undiagnosed celiac disease for 52 years. Most undiagnosed people with celiac disease die way ahead of their time, most often of intestinal cancers. For your families and your sake, don't let it come to that! You HAVE a diagnosis, stop fooling yourself and face the facts, and be gluten-free immediately! Your baby needs you not just now, but for another 20 years (and really, well beyond that).

Guest ShannonL
Guest ShannonL
Posted

Thank you all! You are right.I am going to be gluten-free from now on....I just hope I can get a handle on it quickly. It has been soooo long since I have eaten w/o gluten. Also....as far as the numbness and tingling in my hands.. will that improve?

Shannon

Lame Advertisement.com

par18 Apprentice
par18
Posted
Thank you all! You are right.I am going to be gluten-free from now on....I just hope I can get a handle on it quickly. It has been soooo long since I have eaten w/o gluten. Also....as far as the numbness and tingling in my hands.. will that improve?

Shannon

Lame Advertisement.com

Well I would say if you go and "stay" gluten-free you have the best chance to have any of your symptoms get better or disappear. I had a blood test for the first time 14 months after my biopsy last year and was not surprised that all my levels were negative/normal. This told me exactly what I expected and that is that I have been avoiding gluten successfully. Do I think I still have Celiac Disease? Of course I do. The body can only be as healthy as you allow it to be. How about the rest of your family? Are they going to support you in this second attempt going gluten free? The only thing that will guarantee complete success on this diet is your committment to compliance 100%. Education on your part is manditory but support by others is optional. Will support make it easier? Yes it will. Can you count of support from this forum? Yes again. Get started today and make it happen. Good luck.

Tom

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
Thank you all! You are right.I am going to be gluten-free from now on....I just hope I can get a handle on it quickly. It has been soooo long since I have eaten w/o gluten. Also....as far as the numbness and tingling in my hands.. will that improve?

Shannon

Lame Advertisement.com

The numbness and tingling in your hands suggests neuropathy, which is a common symptom of celiac disease. And yes, chances are that those symptoms will completely go away after a while of being gluten-free. You can do it! You just need to set your mind to it. And coming here and asking your questions was an excellent first step (and shows that really, you knew you have celiac disease and just needed confirmation).

I used to get numbness and tingling in both my hands and feet, and don't have that problem any more.

marciab Enthusiast
marciab
Posted

You can try taking some B12 for the tingling and numbness. Celiacs are typically nutritionally deprived. Use the sublingual or injections though since they will work quicker.

Welcome to the board :) Marcia

Lillyth Explorer
Lillyth
Posted
Ok here goes. I was dx as Celiac 10/01. Immediatly went on the diet and did well. No more cramping/diarrhea, etc. My IGG was 88. My IGA was 21. My pathology report doesnt say too much. My doctors said I have Celiac. THEN 05/03 my tests came back normal (on gluten-free diet). Then I switched dr's and she looked at my files and said that I dont have celiacs I have a wheat allergy. Therefore....my stubborn self eats gluten all the time. My 8mo dd has severe milk/soy and now suspected wheat allergy so when I spoke to her GI about her case I meantioned my wheat allergy and he was concerned for my health. Now he wants to see my chart. He is a sweet man! Anyway. Is it possible to have celiac and biopsy not be too bad...says villa is uniform and intact. I have a terrible habit of eating wheat and taking imodium since it is only an allergic reaction (I KNOW I AM CRAZY!) Thanks...I am so frustrated and worried that I have really hurt myself.

At the Stanford Celaic Conference yesterday I spoke with Dr. Peter (I think) Green. He is one of the MAJOR experts on Celiac. He told me that a Celiac who has been on a Gluten Free diet for a while may very well test negative for Celiac.

Also, when I went through the gammut of allergy tests a few months ago, I was very perplexed to find out I tested "negative" for wheat. When I aksed what that was about, my allergist told me that when they test for wheat allegergies, it does not test for celiac - they are two separate things!!!! A proper wheat allergy WILL KILL YOU - or at least send you into anaphalactic(sp) shock. So unless your throat closes up on you when you eat wheat, and you require an epi-pen for it, then it is NOT a proper wheat allergy.

According to my biopsy, I do not have celiac, bu then, I have been on a gluten-free diet for over six months. As Dr. Green said, a celiac who was on a gluten-free diet might very well have normal biopsy results.

One thing I learned from yesterday's conference is to seek out a Dr. who specializes in celiac disease.

Guest Robbin
Guest Robbin
Posted
You can try taking some B12 for the tingling and numbness. Celiacs are typically nutritionally deprived. Use the sublingual or injections though since they will work quicker.

Welcome to the board :) Marcia

I am interested in this since I still have the numbness and tingling and it isn't getting better. What kind of b12 do you use? Is it otc?

AndreaB Contributor
AndreaB
Posted

Shannon,

Go with the first doctor. As the others have said, if you've been gluten free your tests will come back normal.

I have a thread I started with gluten, dairy and mostly soy free stuff in the recipes section. I am soy intolerant and don't eat it but posted for others.

Please get your daughter gluten free if you're not going to do any testing on her. If you are doing testing she will need to remain on gluten until it's done.

Robbin,

My b12 I got from the doctor. It's prescription because it's injected. I haven't used it since my regular doctor said my levels were normal. I don't know the numbers though. The one injection must have fixed me up along with going back to a meat eating diet.

Matilda Enthusiast
Matilda
Posted

..

Archived

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

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


  • Member Statistics

    • Total Members
      132,118
    • Most Online (within 30 mins)
      7,748
    Cwbtex
    Newest Member
    Cwbtex
    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

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Yes this is very frustrating for me ... not sure what to think.  Feels like I'm having reactions to a lot of things  Now applesauce?? I don't understand 😞 
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Heat intolerant... Yikes

      By Colleen H · Posted

      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
×
×
  • 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.