Jump to content

  • 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):

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
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...