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

At Last An Answer!


Lindsey

Recommended Posts

Lindsey Rookie

I'm 39 and I've suffered stomach pains, wind, bloating, constipation, itchy skin rash, anxiety, foggy head, nervousness and depression for years now (getting progressively worse) I'd given up with doctors until last week when I tried once more.....he is sending me for a coeliac screen which I'd never heard of so I looked it up.

What a revelation! The symetrical skin rash really clinched it! I at last have a answer to this problem that has been litterally ruining my life!

Today is Monday and my blood test isn't until Wednesday morning but I've already cut out the gluten. I've read that I shouldn't do this as my blood tests won't show it if I have it? It's hard to make myself eat gluten now as I've not had any symptoms for 2 days now! I could do with the help from a dietician though and I don't suppose I'll get that if I don't test positive? I'm in the UK by the way...

How important do you think it is to get a proper diagnosis - I'm sure you can tell by my post that it's fairly obvious that I have coeliac.

I suppose I could manage a few bits of bread between now and Wednesday, but what about after that? Will I have to go for other tests and still be eating gluten? I don't want to eat it for a day longer than I have to if I can avoid it.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

A proper diagnosis is an individual thing. I was sick for so long and the doctors never figured it out, I was thrilled to feel better and I do not need a piece of paper telling me I have celiacs. I know I do. And--if your blood test is this week, a few days of gluten-free will not matter and if the test comes back negative, yet you feel better--gluten-free will not hurt you either. We have to take care of us, no one else can.

RiceGuy Collaborator

I agree with darlindeb25. Besides, think of it this way; If the test comes back negative, would you go back to eating gluten and feeling sick, even though you already know that you can feel better without it?

I didn't bother with "official" tests either. To me, the diet is proof positive. Lots of people feel more comfortable seeing it in print though. Given the tendency of tests to give false negatives even for folks currently eating gluten, I'd guess if you wanted to get tested, an early stage such as now should be somewhat more reliable.

Lindsey Rookie
A proper diagnosis is an individual thing. I was sick for so long and the doctors never figured it out, I was thrilled to feel better and I do not need a piece of paper telling me I have celiacs. I know I do. And--if your blood test is this week, a few days of gluten-free will not matter and if the test comes back negative, yet you feel better--gluten-free will not hurt you either. We have to take care of us, no one else can.

I agree with darlindeb25. Besides, think of it this way; If the test comes back negative, would you go back to eating gluten and feeling sick, even though you already know that you can feel better without it?

I didn't bother with "official" tests either. To me, the diet is proof positive. Lots of people feel more comfortable seeing it in print though. Given the tendency of tests to give false negatives even for folks currently eating gluten, I'd guess if you wanted to get tested, an early stage such as now should be somewhat more reliable.

Thankyou both very much for your repiles - I totally agree with that and I will stick with the gluten free. I'll still have the test and take it from there. Thankyou.

Lisa Mentor

Lindsey:

Good luck with your testing on Wednesday. If we can help you in any way, just ask,

Lindsey Rookie

Lindsey:

Good luck with your testing on Wednesday. If we can help you in any way, just ask,

Lisa Mentor

You should remember that it took you quite some time to have damage and it will as well, take some time to heal. It took me about 6 months to see considerable improvement. Others, it may take days or weeks to feel better.

After being gluten free for about a year and a half, it appears that I react about 24 hours later and can feel bad for several days after.

Everyone seems to react differently.


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



Celiac.com Sponsor (A8-M):



Lindsey Rookie
You should remember that it took you quite some time to have damage and it will as well, take some time to heal. It took me about 6 months to see considerable improvement. Others, it may take days or weeks to feel better.

After being gluten free for about a year and a half, it appears that I react about 24 hours later and can feel bad for several days after.

Everyone seems to react differently.

So should I expect to get some symptoms (painful bloating and constipation are my worst ones) for some time yet? I shouldn't be surprised to get these symptoms even being gluten free, for a certain time? I was just wondering as I might think I've not got a gluten allergy if the symptoms persist while gluten free.

Thankyou.

debmidge Rising Star

Every now and then after going gluten-free you might get unexplainable gas, bloating which could either be coming from mysterious sources of gluten or "just because." The "just because" type can go on and off for the first year gluten-free.

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.