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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,007
    • Most Online (within 30 mins)
      7,748

    Comb0001
    Newest Member
    Comb0001
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Welcome @Martha Mitchell, I too would like to know more about your prior lenses, and especially about the potential of gluten in lenses. In theory this should not harm most celiacs, as the autoimmune reaction normally begins in the gut, however, in those who are super sensitive or have dermatitis herpetiformis it may be a potential issue. 
    • Scott Adams
      It's most likely going to be a celiac disease diagnosis based on your blood test results, but wait for your doctor to give you a green light for going gluten-free, as they may want to do additional testing. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Wheatwacked
      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
×
×
  • 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.