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 Our Content
    eNewsletter
    Donate

Crest Syndrome Vs. Celiac?

helpyoubreathe

Recommended Posts

helpyoubreathe Newbie
helpyoubreathe
Posted

My mom was diagnosed with CREST syndrome two years ago. The HORRIBLE fermenting of foods, vomiting, malabsorption has led to a permanemt port she frequently uses to get IV fluids.Complete malabsorbtion.SHe takes 4-5 Protonix a day just for SOME relief.She now weighs a mere 90 pounds, adn I am willing to try ANYTHING to help her. It seem she has ALL the symptoms of celiac.Even SHE noticed that the Gluten laden foods make her feel MUCH worse. SHe look like on of the Ethiopian children you see on TV. HEr little belly is HUGE...like a pumpkin...ANY input is MOST appreciated!

Terri Jones RRT.RCP.

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

Celiac.com Sponsor (A8-M):


seeking-wholeness Explorer
seeking-wholeness
Posted

Terri,

It's great that you're here. Your mother must be so proud to have such a concerned and caring daughter!

If I am remembering correctly, CREST syndrome is related to scleroderma, an autoimmune condition that results in abnormal collagen formation and growth. Autoimmune conditions in general are more common in individuals with celiac disease, so it is definitely prudent to have your mother tested. Doctors can be remarkably stubborn when it comes to testing, though, so remember, "the squeaky wheel gets the grease!" DON'T take no for an answer! It would probably be a good idea to research testing through Open Original Shared Link as well, as a backup option or an adjunct to conventional testing. It seems to be MORE reliable than blood tests, actually, and it would be SO much easier on your mother's frail body than running the entire gamut of conventional tests! (Enterolab can also test for sensitivites to dairy and yeast, which could also be causing your mother distress.)

Am I understanding correctly that your mother uses her IV port for parenteral nutrition, and not just for fluids? If so, I wonder how hard it would be to find a gluten-free formulation for her to use. Maybe they're all gluten-free; I don't have any idea, but I know it would be vital to find one that is if she receives nutritional support that way.

Your mother's intuition is doing her a valuable service; by all means, honor it! Get some testing done, then ditch gluten for good. I wish both of you the best of luck as you pursue improved health!

  • 8 years later...
Aliciajoe Newbie
Aliciajoe
Posted

If I might ask how is your mom doing? We found out a year or so ago that my mom has CREST. Since then I found out I have celiac disease. But unnecessary weight loss at his point is nonexistent. I think her doc should test her but we'll see. Alicia

Darn210 Enthusiast
Darn210
Posted

Aliciajoe,

I just want to point out that this thread is very old . . . over 8 years. The original poster has not logged in (who knows if they have visited as a guest) since they made that post over 8 years ago.

Hopefully, someone else with experience with CREST will join the conversation.

Archived

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

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


  • Member Statistics

    • Total Members
      128,000
    • Most Online (within 30 mins)
      7,748
    Sharon AJ
    Newest Member
    Sharon AJ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
    • knitty kitty
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By knitty kitty · Posted

      Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article. Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.   Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.
×
×
  • Create New...