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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    3. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    4. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.