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

Advice


Natalie1980

Recommended Posts

Natalie1980 Rookie

Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

There will be ups & downs for 6 months, maybe as much as a year. Sort of like being on a roller coaster ride. You can also get gluten withdrawal; just hang in there! I had swelling while eating gluten.

Natalie1980 Rookie

It's all very new and a little daunting I feel a difference already but yes I suppose after 35 years of eating gluten it's not going to disappear overnight Thankyou though x

GFinDC Veteran

Hi Natalie,

That sounds like how it often goes after beginning the gluten-free diet.  We'd like to think that it would be steady progress in the up direction but it seems like our healing goes back and forth a little.  The immune system reaction takes a while to settle down, weeks to months.  So it is hard for the gut to heal while that reaction is going on.

It's helpful to eat simple foods at first and avoid dairy.  Processed foods including baked goods are best left on the shelf.  Try to eat whole foods only including meats, vegetables and nuts.  Carbs and sugar are not helpful.

Things should get better after a month or two if your diet is clean of gluten and diary.  Then you can try adding things back in slowly one item a week.

Peppermint tea can help with bloating.  Probiotics may help too.

Welcome to the forum! :)

Natalie1980 Rookie

Thankyou so much that's really helpful I did wonder about dairy as I seem to bloat a little after a coffee with milk

squirmingitch Veteran

Read the Newbie 101 & follow the links contained within. This will give you a ton of good info. & teach you how to avoid cross contamination.

Yep, you're exactly right.... you didn't get sick overnight & you're not going to heal overnight.

We're here for you though through the good times & the bad & for pity parties too. Questions? Just ask!:)

Natalie1980 Rookie

Thankyou it's nice to have a go to of people tjat understand do u think dairy and carbs are best eliminated a little at first ?


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

I think it won't hurt a bit to eliminate dairy for a while. As far as carbs, that's kind of an individual thing. Some do better without them or with limiting them and some, like myself, have to have carbs. I am skinny, have a high metabolism & would dry up & blow away without my carbs & I eat lots of carbs. They don't bother me.

Keeping a food & symptom log can be a great help especially in the beginning.

GFinDC Veteran
28 minutes ago, Natalie1980! said:

Thank-you it's nice to have a go to of people that understand do u think dairy and carbs are best eliminated a little at first ?

Hi Natalie,

The dairy should be eliminated completely for a few weeks at least.  It can be hard to tell what food is causing symptoms at first.  Dairy is a known problem for many people, even those who don't have celiac disease.  Carbs are bad if you are having digestive upset and bloating.  The carbs feed the bacteria that make gas in your gut and that can cause symptoms.  Everybody is an individual though so you may not have bad symptoms.  But when you are trying to heal fast and aren't sure what's causing the problems, eliminating some common problem foods makes sense.  There is no reason to reduce the dairy and carbs slowly though.  They can be cut out completely right away.  You should be able to tell if it's helping within a week or so.  Eliminating them is no problem as long as you don't blow away! :)

 

 

Natalie1980 Rookie
2 hours ago, squirmingitch said:

Read the Newbie 101 & follow the links contained within. This will give you a ton of good info. & teach you how to avoid cross contamination.

Yep, you're exactly right.... you didn't get sick overnight & you're not going to heal overnight.

We're here for you though through the good times & the bad & for pity parties too. Questions? Just ask!:)    Thankyou do yp

Wow I'm gonna be a skinny Minnie in no time rather than a bloated and confused Thankyou I'll try look at these images 4 days gluten free

image.png

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.