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

New To All Of This...

SafeSpuds

Recommended Posts

SafeSpuds Newbie
SafeSpuds
Posted

My little girl (will be 3 years old in October) has just been diagnosed with Celiac Disease. She has been having problems since she was 13 months old and after allergy testing came up empty, the ped sent us to a GI doc who did a coloscopy and endoscopy. The blood test and biopsy was negative for Celiac (and everything else...) All they could find was colitis and acid reflux, which the doctor said was caused by the colitis, so he treated the colitis and not the reflux. Nothing changed. We moved to another state and was finally seen by another GI doctor (After 2 months of waiting to get in and then another month waiting for another colonoscopy and endoscopy). He put her on Prevacid which helped with a lot right off. The doctor called me on Monday and let me know that the biopsy came back positive for Celiac this time. I immedately put her on a Gluten-Free diet, so she hasn't had any gluten since Monday around lunchtime.

Today her diarrhea is much worse. I don't know if she's got a virus or something or if she's not reacting well to the diet or what. We haven't taken her off dairy yet. Should I wait a few days before doing that or just jump into that too?

This is all a bit overwhelming at first, although the Gluten Free hasn't been as difficult as I had feared.

Alicia

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

Celiac.com Sponsor (A8-M):


Guest j_mommy
Guest j_mommy
Posted

Be sure to be concious of any hidden gluten or CC. But that said the same thing happened to be after a few days of gluten-free. It takes awhile for your body to get straightened out!

My Dr suggested to go off dairy for awhile and then add it back after awhile(a month or so of no symptoms of celiac). I knew I was lactose intolerant before going gluten-free. I can handle a glass of milk a day, anymore than that and it's too teh potty!

Many people don't know they are Lactose intolerant until after they start the diet b/c teh sypmtoms are very similar.

I hope your little one feels better soon!!!!!

Guhlia Rising Star
Guhlia
Posted

Lactose is processed on the ends of the villi. The villi are what is damaged by Celiac Disease. Many Celiacs are lactose intolerant until they have reached a certain level of healing. I would say to go ahead and eliminate lactose for the time being and reintroduce it in a few months. You also may be witnessing a slight gluten withdrawal. Keep her on the diet if she was diagnosed with Celiac. False positives are virtually unheard of.

Some people take longer to heal than others. There are some people who take months to notice any benefits with the gluten free diet. Others react almost instantly, like I did. Give her time to heal. The next few weeks or months will likely be a little rocky, but she'll be SO much healthier and happier for it.

debmom Newbie
debmom
Posted
My little girl (will be 3 years old in October) has just been diagnosed with Celiac Disease. She has been having problems since she was 13 months old and after allergy testing came up empty, the ped sent us to a GI doc who did a coloscopy and endoscopy. The blood test and biopsy was negative for Celiac (and everything else...) All they could find was colitis and acid reflux, which the doctor said was caused by the colitis, so he treated the colitis and not the reflux. Nothing changed. We moved to another state and was finally seen by another GI doctor (After 2 months of waiting to get in and then another month waiting for another colonoscopy and endoscopy). He put her on Prevacid which helped with a lot right off. The doctor called me on Monday and let me know that the biopsy came back positive for Celiac this time. I immedately put her on a Gluten-Free diet, so she hasn't had any gluten since Monday around lunchtime.

Today her diarrhea is much worse. I don't know if she's got a virus or something or if she's not reacting well to the diet or what. We haven't taken her off dairy yet. Should I wait a few days before doing that or just jump into that too?

This is all a bit overwhelming at first, although the Gluten Free hasn't been as difficult as I had feared.

Alicia

cruelshoes Enthusiast
cruelshoes
Posted

When I first went gluten-free, it took me 3 days before I started to notice any difference at all. It took a good 3 months before my symptoms were mostly gone. Additionally, it sometimes seemed that I would slide backwards in my healing occasionally, and then start getting better again. I don't believe it was gluten exposure but, rather, my body trying like heck to normalize itself.

So be patient and watch out for the hidden gluten and CC.

Archived

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

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


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      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
      New (possible) celiac diagnosis

      By Judy M · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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.
×
×
  • 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.