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

Help! Im New!

jrose1982

By jrose1982
in Coping with Celiac Disease

Recommended Posts

jrose1982 Newbie
jrose1982
Posted

Hi! My name is Jennifer. Im 28, mother of 2 and Im married. I live in the Nashville area.

Ok, my thing is, I have alopecia areata. I was diagnosed in early 2008. My dermatologist thinks that alopecia just happens and vitamins are a cure all. I love my vitamins and believe in them! But, they dont make my hair grow back, nor keep it from falling out.

So, I research things all the time but I have never read about "gluten-free" although I see it everywhere. Yesterday, I was curious to know what gluten-free was, (Ive been looking about different food lifestyles and stopped eating red meat about a month and a half ago.) so, I looked it up and there were alot of articles talking about gluten and hairloss. So, I looked into it somemore and saw that some people with alopecia try eating no gluten and it helps! Their hair, slowly but surely, starts growing again.

I get Kenalog shots every 1-3 months for mine. It works 99% of the time but I would love to be independent of these shots. I would like for my hair to grow on its own.

Now, this is all new to me. From what I have read I need to steer clear of wheat, rye, barley and most of the time, oats. I have a few questions, I hope someone can help me out!!

What else should I be cautious of?

Does anyone else have alopecia areata, universalis, or totalis? Did it get better with gluten free therapy?

What can I do that will make this transition easier.

I believe in this and think it could be the key to my hairloss.

I HAVE NOT had any tests run or had a diagnosis for wheat or gluten sensitivity and no test or diagnosis for celiac disease.

I do plan to atleast have a blood test and then any other necessary test ran.

Thanks alot!!! Any advice would be great.

~Jennifer

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

Celiac.com Sponsor (A8-M):


K8ling Enthusiast
K8ling
Posted

I have NEVER heard of alopecia being a sign of celiac.

I did, however, have hair fall out before I was diagnosed. However, it was determined it was NOT alopecia but was a major vitamin deficiency, Once the diet changed, it was a big deal and my whole body got better. My hair stopped falling out.

I do hope it helps, but I wouldn't go gluten-free until the blood test is done or you'll get a false negative. I got a false negative after being gluten-free.

jrose1982 Newbie
jrose1982
Posted
  • Author

Just found this on here. :)

K8ling Enthusiast
K8ling
Posted

That's so interesting!!! So it may not be alopecia but vitamin deficiency. But if you're on vitamins wouldn't that resolve it? Or would you not absorb enough?

jrose1982 Newbie
jrose1982
Posted
  • Author

That's what Im thinking! As far as the vitamins, I dont know. I take a multivitamin with extra B D and C, then 1200mg of fish oil. My dermatologist insists that if I keep up with the vitamin therapy, which Ive been doing for 3 years, my hair will eventually grown on its own. It hasn't. So, I feel like it could be an absorption problem. Then with more and more research alot of random symptoms I been have over the past few years that I think could range from either a brain tumor to IBS are beginning to make more sense.

Luddie Newbie
Luddie
Posted

That's what Im thinking! As far as the vitamins, I dont know. I take a multivitamin with extra B D and C, then 1200mg of fish oil. My dermatologist insists that if I keep up with the vitamin therapy, which Ive been doing for 3 years, my hair will eventually grown on its own. It hasn't. So, I feel like it could be an absorption problem. Then with more and more research alot of random symptoms I been have over the past few years that I think could range from either a brain tumor to IBS are beginning to make more sense.

Hi, Just my two cents worth,

when I was diagnosed with Celiac (I didn't have any intestinal symptoms, just migraines and a thyroid condition) my doctor slowly put me on really high doses of certain vitamins and minerals along with a gluten free diet. With blood tests every three months he was able to see just what was going on, and now, three years later, all (almost) my blood tests are exactly where he thinks they should be. One side effect has been my hair growing in a bit thicker and with a bit more body, almost a wave. So something did affect my hair! Maybe you're just on too low a dose. You could ask!

I will admit the whole celiac thing isn't easy! I apparently got glutened somehow last summer and have spent the time since then having really painful neurological symptoms. They, too, are slowly going away but since I'm older, 77, it takes a lot more time for me to "bounce back" and heal than you younger people!

Good luck!

Luddie

jrose1982 Newbie
jrose1982
Posted
  • Author

It's really hard for me right now. Im starting today trying not to eat glutenized things as much as possible. Im eating at Panera, I have freshly made yogurt (saw it made infront of me by a manager who actually used to be MY manager) with no granola and a bottled water. She said the black bean soup was gluten free too. Ummmmm let's see. Yesterday, beyond better judgement, actually HORRIBLE judgement, I had a 10 piece nugget from Mickey D's with fries. Guess what within 30 minutes I had a bad a** headache that lasted for about 5 hours and felt extremely tired. Felt like my eyes were trying to fall out. Also, had random pains all over my belly soon after but that didn't last too long. Im trying to pay attention to the "symptoms" that Im having after eating certain foods. I work at a restaurant so I think I will order a grilled chicken breast and broccoli. I think I will make the manager scrub the grill lol. What a sight!!! Haha!

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

Celiac.com Sponsor (A8-M):


kellynolan82 Explorer
kellynolan82
Posted

It's really hard for me right now. Im starting today trying not to eat glutenized things as much as possible. Im eating at Panera, I have freshly made yogurt (saw it made infront of me by a manager who actually used to be MY manager) with no granola and a bottled water. She said the black bean soup was gluten free too. Ummmmm let's see. Yesterday, beyond better judgement, actually HORRIBLE judgement, I had a 10 piece nugget from Mickey D's with fries. Guess what within 30 minutes I had a bad a** headache that lasted for about 5 hours and felt extremely tired. Felt like my eyes were trying to fall out. Also, had random pains all over my belly soon after but that didn't last too long. Im trying to pay attention to the "symptoms" that Im having after eating certain foods. I work at a restaurant so I think I will order a grilled chicken breast and broccoli. I think I will make the manager scrub the grill lol. What a sight!!! Haha!

You're right, It can be very difficult being new to the gluten free diet. I know many who go through these struggles day-to-day. One thing I am doing is taking a variety of businesses and restaurants to task that FALSELY advertise gluten free foods.

I have much passion for the gluten free diet and am keen to make the gluten free labelling laws within Australia more known amongst the general population so these can be addressed.

Archived

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

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


  • Member Statistics

    • Total Members
      131,984
    • Most Online (within 30 mins)
      7,748
    MARYANN RICHARDS
    Newest Member
    MARYANN RICHARDS
    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
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.