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

For Irishheart And My Story...........

roxieb73

Recommended Posts

roxieb73 Contributor
roxieb73
Posted

Was reading posts. Bits and pieces of your story. Sounds like you were on death's door step before diagnosis! Ughhh....... Makes me feel almost lucky. Thank you for sharing your story.

I have had symptoms back to birth! I was a Failure to Thrive baby. 12lbs at a year old, I had intusseception right before my first birthday. They told my mom I was going to die. Every time I got off the clear liquids and they tried to feed me I would get soooo sick I wound up in the hospital. Then things seemed to get better as a child I seemed ok but I did struggle with my weight. I started gaining weight at 12 and have been over weight since then. I never had regular periods. When I got pregnant with my son I really started getting sick. I had 9 months of pure hell. Pitting edema at 3 months on bedrest for 6 weeks, preclampsia. After I had him I got septic. Pregnancy seems to be what brought it on full force. My son is almost 8 now. :( I have gone from 170lbs when I got pregnant to over 300lbs. I have massive edema, hypertension, PCOS, headaches all the time, severe reflux, gallstones, elevated liver enzymes, chronic fatigue, I can barely walk from the muscle weakness. It is impossible to be on my feet for even 5 mins. Severe RLS, what I thought was irritable bowel, nightblindness, and recently this awful rash that I believe to be DH after posting pictures here.

I went 2 weeks off gluten for the adkins diet and felt SOOOOOOOOOOO much better!!! I lost all extra fluid, 20lbs, was walking better, no headaches, pain was 40% better and even my GERD and RLS were better. That is when because of symptoms my son had the doctor said the MAGIC word.... CELIAC! I looked it up and the symptoms and it was like OMG THAT IS ME!!!!!!!!!! I feel like FINALLY things make sense and there is a reason for this living hell I am in. Then the antibody tests came back negative! :( My doc asked if I was eating gluten. I told him I did the night before the test and had only been gluten free for 2 weeks. He just lowered his head and shook it. He said he believed we got a false negative and wanted me to start back eating gluten for 4 weeks then we would retest. I am also waiting on results of HLA typing. I am 18 days in and feel like I am dying!!!! Don't know if I can make it another 10 days for antibody tests let alone longer for biopsy! Just wishing I could fast forward a month.

Regardless of test outcomes I am going gluten free because after being here I can't deny even if it is not Celiac I AM gluten intolerant!! If I felt that much better after 2 weeks how will I feel in a month? I can't wait to get to that point!

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Hon, I feel your pain, I really do.

I am sorry you have to keep eating the poison that makes you feel like you are dying just for a test. You sure sound gluten intolerant to me. IMHO

Why didn't he just order a BIOPSY? If you've got enough damage, it would still be evident after just 2 weeks gluten-free.

Since you're almost there, and a DX is important to you, I guess you have to stick with it.

Symptom resolution would be enough for me to stay off gluten for life. If you were NOT gluten intolerant, nothing would have changed, right?

I could never withstand a gluten challenge, nor would my doctor suggest such a thing.

Hang in there. Test results or not---do what you feels right in your gut (pun intended!)

Best wishes--and keep us posted.

roxieb73 Contributor
roxieb73
Posted
  • Author

Hon, I feel your pain, I really do.

I am sorry you have to keep eating the poison that makes you feel like you are dying just for a test. You sure sound gluten intolerant to me. IMHO

Why didn't he just order a BIOPSY? If you've got enough damage, it would still be evident after just 2 weeks gluten-free.

Since you're almost there, and a DX is important to you, I guess you have to stick with it.

Symptom resolution would be enough for me to stay off gluten for life. If you were NOT gluten intolerant, nothing would have changed, right?

I could never withstand a gluten challenge, nor would my doctor suggest such a thing.

Hang in there. Test results or not---do what you feels right in your gut (pun intended!)

Best wishes--and keep us posted.

You just answered the question I just posted. lol So they will do biopsies without blood work. I am guessing he didn't because he is my GP not my GI doc. So the tests are what he can do. I will have to go elsewhere for the biopsy. ;)

ciamarie Rookie
ciamarie
Posted

Also, which blood test(s) did they do? Apparently there are 4 or so different tests included in the 'full celiac panel'. If you've been reading some of the other threads on here, you probably found that info., but just thought I'd throw out the possibility that they didn't do the full panel. Hang in there, and welcome to the forum!

roxieb73 Contributor
roxieb73
Posted
  • Author

Also, which blood test(s) did they do? Apparently there are 4 or so different tests included in the 'full celiac panel'. If you've been reading some of the other threads on here, you probably found that info., but just thought I'd throw out the possibility that they didn't do the full panel. Hang in there, and welcome to the forum!

I did find that out after. I did not get a full panel the first time but I have a full list of tests to run the second time. ;)

IrishHeart Veteran
IrishHeart
Posted

I did find that out after. I did not get a full panel the first time but I have a full list of tests to run the second time. ;)

That is a VERY good idea, Roxie! ;)

Archived

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

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


  • Member Statistics

    • Total Members
      131,583
    • Most Online (within 30 mins)
      7,748
    Lindy Lulu
    Newest Member
    Lindy Lulu
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.