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

Do You Think I Might Have Celiac


Smunkeemom

Recommended Posts

Smunkeemom Enthusiast

i have diarrhea and constipation one or the other all the time -

brain fog depression - tired all the time rash gaining weight fast

my dad- daughter and her two daughters have it

just for info, that's my mom posting under my account up there ^ I was trying to help her register and for some reason the thing signed on under my name, guess I had posted from her house before


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Well, your symptoms sound just like mine before going gluten free. So, yes, in my opinion, there is a very good likelyhood that you have celiac disease, especially with so many people in your family having it. I say, definitely get tested!

Smunkeemom Enthusiast

she had the blood test, and it was pos. but the doctor told us that since we weren't losing weight that we didn't have it. I am trying to convince her the doctor was very wrong

CarlaB Enthusiast

I would agree. Your symptoms sound very suspicious, and with the family history!

Lisa Mentor

Hey Mom:

For me it is very typical after D to have constipation. Brain fog, lack of concentration, in lah-lah-land while driving, which is scarry for me. I would certrainly entertain testing. It would be important to know, so if you are celiac, you can begin to feel better and to ward off other very critical issues.

Glad that you posted and feel free to ask away.

Lisa

CarlaB Enthusiast

That's a common misconception!!!! Not all celiacs get skinny! There is another thread going on about how to lose weight. Even my doctor admitted learning from me about this disease ... I'm talking about my internist, not the GI who knows everything.

KaitiUSA Enthusiast

Some people gain instead of lose and when they gain usually doctors blow it off. Your symptoms sound like they could be celiac.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient
she had the blood test, and it was pos. but the doctor told us that since we weren't losing weight that we didn't have it. I am trying to convince her the doctor was very wrong

If she had a positive blood test, then she has it! When will doctors realize that we all don't lose weight? As we speak, I would love to lose 20 lbs :D . But seriously, I would take the blood test as proof (not to mention the symptoms, which also point to Celiac), and go gluten-free. Especially with so much of this in your family ;)

Guest nini

hi mom, you have a positive blood test, you absolutely have Celiac. I did not lose weight before my dx either. I was extremely overweight and since going on the gluten-free diet three years ago, I have lost OVER 100 pounds! Yes you read that correctly! I was dx'ed by my positive blood test along with positive dietary response. I agree, when will these dr.s recognize that not all Celiac's are skinny before dx???!!!!!

wolfie Enthusiast

It is starting to make me really angry that drs dismiss people if they aren't losing weight or having the "Classic" symptoms! The symptoms sound very suspect to me. If the bloodwork was positive, she has it.

On a side note here, I watch a little boy who is almost 2.5. He has had constipation issues from the time he was a baby and has been on a perscription laxative for over a year now. His Mom (my friend) finally requested a second opinion from a Pediactric GI and even though he is in the 95% for height and weight, they are running a Celiac panel on him just to rule it out. I wanted to run over and hug this dr!!! I had to beg our Ped to run the test on my 10 y/o b/c he doesn't have any weight loss issues. He does have stomach, anxiety and possible ADHD issues, though. Sorry to go off on a tangent, but I really wish more drs would look outside of the typical presentation.

penguin Community Regular

positive blood test = celiac

no question!!

I'm doing a gluten challenge after being gluten-free for 4 months because I want a biopsy, and I've gained 8 lbs in the past week! :o Not everybody gets skinny, and it is possible to have all of the classic symptoms EXCEPT wasting, or even no classic symptoms at all!

  • 2 weeks later...
Smunkeemom Enthusiast

Okay, so her new doctor retested her blood (couldn't find the old results on her medical record) and she tested pos. on her IgA and her ttg and he said that meant she "didn't have it" and said all her symptoms were IBS...

I thought your if the ttg was pos. then you had it, isn't that the specific celiac one?

I asked him and he said that if she had celiac all would be pos. :unsure:

aikiducky Apprentice

My mouth just fell open when I read that a positive ttg wasn't enough for the doctor!!! AAAArgh!

Could she have a biopsy, positive ttg means there's a good chance of damage, it would be difficult to ignore THAT?

Pauliina

tarnalberry Community Regular

I'm tired, so I'm going to be blunt:

her doctor is a moron - your body doesn't produce antibodies to something when it doesn't think it's a problem. she should find a new doctor, try the diet, and listen to her body.

Guhlia Rising Star

Ewwww.... I agree w/ Tarnalberry... No offense, but that doctor should be canned!!! You absolultely have Celiac w/ results like that. Starting the gluten free diet immediately will help prevent you from doing any further damage on your body. Good luck and please listen to the people on this board about your diagnosis. They know what they're talking about.

loraleena Contributor

Her doctor is a complete and utter idiot! She absolutely should be put on a gluten free diet!!!

Smunkeemom Enthusiast
Her doctor is a complete and utter idiot! She absolutely should be put on a gluten free diet!!!

I told her that, and she says "oh, but he went to medical school and took an oath and stuff"

I think she is in denial. I am going grocery shopping with her this weekend though, I will try to suggest gluten free foods, maybe if she see's all the food she can eat, then she will feel better about it.

Archived

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

  • 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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.