Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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?)

Link to comment
Share on other sites
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!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,213
    • Most Online (within 30 mins)
      7,748

    marimom
    Newest Member
    marimom
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      You have three celiac disease specific antibody tests that are positive: Endomysial  Antibody IGA (aka, EMA), tTG-IGA, and tTG_IGG. Furthermore, your Immunoglobulin A at 55 is low, meaning you are IGA deficient. This one is not an antibody test for celaic disease per se but a measure of "total IGA" levels and if low (yours is low) it can suppress the individual antibody scores and even cause false negatives. So, yes, it definitely looks like you have celiac disease.   Do not yet begin a gluten free diet as your physician may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining for confirmation of the antibody testing. This may help:   
    • Bayb
      Hi, I received my labs via email yesterday and have not heard back from my doctor yet. Can anyone tell me if these results indicate I have Celiac?      Endomysial Antibody IgAPositive  Ft-Transglutaminase (tTG) IgA6  H0-3 (U/mL) - Negative 0 - 3 - Weak Positive 4 - 10 - Positive >10 - Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten-sensitive enteropathy. FImmunoglobulin A, Qn, Serum55  L87-352 (mg/dL) Ft-Transglutaminase (tTG) IgG183  H0-5 (U/mL) - Negative 0 - 5 - Weak Positive 6 - 9 - Positive >9
    • Aussienae
      Mine is definitely triggered by inflammation and stress! I do also have arthritis in my spine, but the pain is more in my pelvic area. Im sure i have other food intolerances or other autoimmune isues but the more I focus on it and see doctor after doctor, it just gets worse.  Best thing is get of Gluten! (I also avoid lactose). Try to limit stress and anything that causes inflammation in your body.
    • ButWhatCanIEat
      Good morning,   I got an email about replies to this post. Some of my doctors had blamed a slipped disc for the pain I had and that contributes, but after meeting with a gastroenterologist AGAIN and trying some lifestyle modifications, I found out I have IBS and can't tolerate corn or excessive fructose to any degree. Cutting out corn AFTER having cut out all gluten containing products was a real pain but I feel much better now!
    • trents
      So, I contacted Scott Adams, the author of that article and also the creator/admin of this website, and pointed out to him the need to clarify the information in the paragraph in question. He has now updated the paragraph and it is clear that the DGP-IGA does serve the purpose of circumventing the false negatives that IGA deficiencies can generate in the tTG-IGA antibody test.
×
×
  • Create New...