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

Does This Sound Right?

kaysol

Recommended Posts

kaysol Rookie
kaysol
Posted

I went to my Dr. last week because I have been trying to lose weight for 7 months with no luck (have actually gained 4 lbs). I am working out, tried eating less, eating more (after testing my rmr) etc. I also complained of bloating in my stomach. anyway, he ran all kinds of blood tests. while waiting for them to come back I cut out dairy and was amazed how much better my bloating was so thought I had it figured out. yesterday they told me I am likely positive for celiac. I was in shock. everything I have read does not sound like my symptoms (I know some people do not have any) Isn't weight loss one big symptom (because I am NOT losing weight, believe me!) I got another blood draw for another test (not sure the name of that one) and am waiting on that. The reason I am quesitoning this whole thing is my results were SO high that it seems out of the range even.

My Gliadin AB IGA was 144 and the AB IGG was 111. It says high is over 30, mine is like 4x that high. If mine are really that high wouldn't I be feeling more symptoms or at least be skinny? I feel so overwhelmed right now, I was just diagnosed with a heart condition in January and can't believe I know might have to deal with yet another major lifestyle change. I can't even begin to imagine how hard a gluten-free diet will be, everything I look at has some form of Gluten, how do you do this! I am so upset right now!

Does anyone have any advice on my lab results while I wait for the other to come back - do these numbers sound ridiculously high or do people have numbers like this often?

Any help would be appreciated, I am so lost! (also I did the test while fasting since they were also checking glucose, would this make any difference?)

Thanks!

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

Celiac.com Sponsor (A8-M):


terri Contributor
terri
Posted

Hi, I'm sorry to hear you're so distressed but can certainly understand why! Diarrhea, abdominal pain, weight loss, those are "classic" Celiac symptoms. They are now finding that people with "classic" symptoms are actually in the minority! You do not need to be losing weight or having diarrhea. You can be constipated, have headaches, there is a multitude of symptoms that can go along with this disease. I'm not too sure about the levels that you mentioned, as my doctor tested me and called me and told me my blood test was positive for Celiac. (I had classic symptoms). I went on the gluten-free diet 4 1/2 months ago and the difference is incredible. Yes, it is very hard to be gluten-free but trust me, the results are well worth it. This board is here for you to vent, cry and ask for help. We've all been there and are here for you.

sunflower Newbie
sunflower
Posted

I won't help you much with your results either, as I was diagnosed as a baby and don't know about meaning of test results or what they are supposed to be like... But I think that if your results are so high it should mean that your body's reaction to gluten was quite strong, even though you didn't show "classic" symptoms. I understand the shock and I am sorry for you.

I noticed that there is a part of this board called "Gluten-free diet and weight issues" ( Open Original Shared Link )- I haven't read it until now because I'm OK with my current weight, but after reading your post I looked through some messages posted there and I found out that there is quite a number of people who were diagnosed with celiac disease even though they were also fighting with their overweight. I thought you might want to look through those messages to see if they can help you. Unfortunately, I can't offer any more help, but I hope that this board will help you learn how to change your lifestyle, as it has helped me.

lovegrov Collaborator
lovegrov
Posted

I didn't have obvious symptoms (at least not right up until I suddenly got VERY ill) and my numbers were also sky-high, indicating I had had celiac for quite some time with no symptoms. Your doctor is probably doing the ttg now, but with the two readings you have the odds are soemthing better than 95 percent that you do have it. BTW, I know of people weighing 250 or more before they were diagnosed. If you do indeed have it you're very fortunate to have a doctor who knows you don't have to be skinny to have celiac.

richard

kaysol Rookie
kaysol
Posted
  • Author

Thank you all so much for your replies. I am so thankful to have found this board. I would feel so alone without it! No one understands what I am going through. friends are saying things like "well you were never a big bread lover anyway", they have no idea that just about eveything in their cuboards (and mine!) has gluten in it. It doesnt help that I have 2 small children and find it hard enough to cook dinner once must less twice! Also now I have to worry about passing this onto them as well as the worry they could get my heart condition which is also heriditary! I am a mess right now but I'm sure I will learn to cope and be fine.

Did anyone else feel like they were mourning food after they found out? (i really am not a pig, I just enjoy cooking and eating) :P I keep thinking things like "I can never eat so and so again" its so ridiculous and silly but thats where I am right now.

Thanks again for all the support and replies, I appreciate it!

Stephanie

celiac3270 Collaborator
celiac3270
Posted

People don't have to be skinny to be celiac -- actually, many are overweight or obese.....a really skinny, symptomatic person is the sterotypical celiac, but not necessarily the most common.

It wouldn't make a difference if you were fasting--your blood is not going to skyrocket or drop dramatically if you don't eat for a day or two.

-celiac3270

future140 Newbie
future140
Posted

My husband was off gluten for three days when he had his blood test. The doctor said that was fine but from what I've read on the message boards he should have been eating gluten up until he was tested. Any insight would be great. Also, how do you find a doctor who knows about celiac? We had to push for him to test for it.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    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

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.