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

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

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
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
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

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
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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    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

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • 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.