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

Diagnosed In Childhood- Now Adult

KatieKat

Recommended Posts

KatieKat Newbie
KatieKat
Posted

Hi- I'm new here :) Well, I have a few questions because I don't have the insurance to get tested right now. So, here's the story..

As a baby, I was diagnosed with some type of wheat (well, gluten) intolerance and milk intolerance. I thought I grew out of the wheat thing, but the milk is still an issue- in large quantities and I prefer soy anyway. BUT I read that you don't grow out of this (gluten intolerance).. Is this true?

Also, through the years, I have been diagnosed with irrital bowl syndrome, a spastic colon, fibromyalgia, unexplained fatigue (with tons of thyroid tests), and I have severe migraines. So, I am guessing I don't even need a straight diagnosis. I am hoping my migraines will go away.

I am looking to see what other's opinions are on this... Does this pretty much mean I am allergic? Grr.. I don't want to be, but I'll do anything to stop all these health issues..

Thanks,

Katie

:rolleyes:

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Well you can get tested for celiac to see if you have it...but you can't grow out of it if you have it.

If you want to get blood tests you need to stay on gluten...since you know you have a problem with it you could always eliminate gluten and see how you feel. However it is an all or nothing diet with absolutely no cheating if you want to get better.

Also, celiac is not an allergy..it is an intolerance

KatieKat Newbie
KatieKat
Posted
  • Author
Well you can get tested for celiac to see if you have it...but you can't grow out of it if you have it.

If you want to get blood tests you need to stay on gluten...since you know you have a problem with it you could always eliminate gluten and see how you feel. However it is an all or nothing diet with absolutely no cheating if you want to get better.

Also, celiac is not an allergy..it is an intolerance

<{POST_SNAPBACK}>

Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

Claire Collaborator
Claire
Posted
Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

<{POST_SNAPBACK}>

Go gluten-free by all means. When you have insurance or the funds to be tested you could go with the Enterolab test (insurance iffy?) or with Kimbal labs. Most insurances will pay for Kimball. This is a genetic test - done by cheek swab. It will determine if you have the specific gene markers associated with celiac. Having them doesn't mean that you have celiac but if you also have the symptoms then it is an evidence based assumption that you do. If you do not have the markers you could not have celiac. Unfortunately Kimbal does not test for non-celiac gluten sensitivity that is usually the answer when a celiac test (in the presence of symptoms) is negative. Enterolab does both tests. Claire

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Hi Kaite, and welcome!

Just one comment from me, right now -

I have been learning that soy, and corn, have also been linked to villi damage...so, prepare yourself for the possibility that you may need to get those out of your diet, too...

If you haven't already, you may want to check out this thread that I started with my questions about dairy/casein for more info:

Open Original Shared Link

Good luck, and I hope you'll find here all of the info you'll need to find your way back to good health!

Gina

nettiebeads Apprentice
nettiebeads
Posted
Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

<{POST_SNAPBACK}>

Well, the gluten-free diet would be cheaper than dr's testing, and it is a valid diagnostic tool - the gluten or diet challenge. That's how I was dx'd 9 years ago. But you do have to be 100% gluten-free - no wheat, oats (they're cross-contaminated in the US. The official verdict on oat itself is still out), rye or barley. No malt from barley, or spelt, or triticale. Some things are labled wheat free but still off limits to celiacs. And as for being depressed about the diet - I just wanted to feel better so I didn't care what I had to cut out. I still had issues with it at the beginning, but since I've been really 100% gluten-free, I don't miss the stuff - I enjoy my health too much. And depression has been linked to celiac disease, so going without gluten-free relieves the depression.

Good luck and keep us posted, ask any questions you want.

  • 9 months later...
lindalee Enthusiast
lindalee
Posted
Hi Kaite, and welcome!

Just one comment from me, right now -

I have been learning that soy, and corn, have also been linked to villi damage...so, prepare yourself for the possibility that you may need to get those out of your diet, too...

If you haven't already, you may want to check out this thread that I started with my questions about dairy/casein for more info:

Open Original Shared Link

Good luck, and I hope you'll find here all of the info you'll need to find your way back to good health!

Gina

Thanks for posting this

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    3. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    5. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • 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.