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

Reviewing Celiac In The Family And Need Advice.


Woolygimp

Recommended Posts

Woolygimp Contributor

Posted a few threads here and there, but this pretty much sums it up. Especially with the latest news that my liver is possibly damaged.

Ran into hypothyroid symptoms about three years ago, which got real bad until they were relieved with T3 therapy vs Wilson's Temperature Syndrome. Have severe anxiety (since being medicated w/ Alaprozam this has relieved some dry skin, dry mouth, dry eyes, and some fatigue), with normal cortisol levels (suspected Pseudo Cushing's), sudden onset of lactose of intolerance, elevated liver enzymes w/ possible cirrhosis (finding out extent of the liver damage next Tuesday), 50 lbs worth of weight gain, and enlarged prostate w/ trace amounts of blood in urine, fatigue, malaise, a red rash ALL over my body [doctor says is folliculitis] and finally IBS.

I'm 20 years old, and up until I was 17 was very healthy. All this has happened in the past 3 years. It's like something took a scrambler to my body, and it's a mess. I work out almost every day, so I'm still in pretty good shape although a lot of this weight just isn't coming off. Went gluten-free for 2 months, IBS symptoms cleared up. Had 2 antibody tests: negative, negative.

Family, and here's the kicker.

Mother - Rheumatoid Arthritis (recession), severe IBS symptoms, and hypothyroidism.

Sister 1 - Rheumatoid Arthritis, Sclerosis, and a few other auto-immune diseases. (34 years old)

Sister 2 - One of the worst cases of Psoriasis the dermatologist has ever seen. (26)

Sister 3 - Hypothyroidism. (29)

Sister - Healthy as of now (17).

Sister 3's daughter - Weight gain, depression, anxiety, and IBS symptoms (6 years old).

Me and my oldest sister have definitely taken the brunt of all of this. We were both perfectly healthy, and then it just kept getting worse, and worse. After explaining Celiac, and letting them read print-outs they suspect the disease may be the cause of a few of the problems so my mother had her blood test (antibodies) as well as the HLA Class II - DQ2/DQ8 gene test to see if she has a possibility of being a carrier.

[eagerly awaiting results...]

My symptoms appeared after one of the more stressful teenage experiences, a breakup.

I've done so much research, and I can't think of ANYTHING else that would cause this range of problems. Absolutely nothing, but Celiac. My liver has me worried now, and I've only noticed a small patch roughly 2inch x 2inch near my right shoulder which is yellow (could be jaundice). I've also got purple striae near my armpits.

At 17 I was 135-140.

1 month later I was 180.

As of 1 week ago (three years later) I was at 195, even with daily exercise.

As of today I'm down to 186, been gluten free since that week. Staying on the diet this time.

------------------------------------------------------------------------------------------------------------------

I'm just wondering what you guys think of this whole mess. If my mom tests negative for the DQ2/DQ8 gene then it rules out Celiac, but if she even has the gene , and is negative for the antibodies, then I'm not prepared to give up without being absolutely certain this isn't what is causing the problems.

Meaning expensive blood tests to go around.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Here's another one with almost identical symptoms to celiac. You might look at it.

Open Original Shared Link for symptoms

Open Original Shared Link

www.Lame Advertisement

and Open Original Shared Link for testing.

Don't let the dr.'s laugh it off. Don't get tested anywhere but IGeneX.

Hope you get to the bottom of your health problems very soon.

BTW, the first time I had Lyme symptoms was after a breakup. I was asymptomatic before then. That was back in 1982.

Purple straie can be from a Bartonella coinfection.

super-sally888 Contributor

Hi,

Regardless of what the blood tests say (not all genes are discovered, so even if the tests are negative doesn't mean that gluten is not a problem), you don't need a drs orders to try out this diet or stick with it if it makes you feel better. And this is a healthy diet! Particularly if you stay with natural rather than processed foods...

The family history could be due to celiac.

Of course, if the tests are positive, then you have your answer and the good thing is that most problems can be prevented by sticking with the diet.

Let us know how you go. Maybe some of your family members will also try out this diet.

Sally

Jestgar Rising Star

Your liver can fix itself, don't stress over it. The yellow spot could be a healing bruise and the striae could be new stretch marks from the sudden weight gain. (Did your boobs get bigger?)

Nancym Enthusiast

Body builders also get stretch marks.

There's lots and lots of weird autoimmune diseases but pretty much everyone such disease is connected to celiacs so you might be on the right track. Good luck!

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    4. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

    • Total Members
      133,214
    • Most Online (within 30 mins)
      7,748

    Isla M
    Newest Member
    Isla M
    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
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
×
×
  • 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.