Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Waiting For A Doctor's Appointment


the2ofus

Recommended Posts

the2ofus Rookie

I hope you have some information for me. My daughter had colic when she was a baby, Iron free formula, soy formula, colic drops and up all night. As she grew it subsided. Several years ago I suspected she was lactose intolerant. We took her for the breathing test at the hospital and her readings came back that she was border line intolerant. 10 minutes after she drank the liquid they gave her she ran, and I mean ran to the bathroom with diarrhea. I think that made the results pretty clear. We have been treating her for the problem ever since. She uses as much dairy free products as possible and takes lactaid tablet, milk, ice cream etc.

She is still having a problem with stomach aches and ocassional unexplaned diarrhea. In addition to this she gets chunks of regergetation comming up on her periodically. She gets heartburn, nausia and head aches more than I think a 12 year old should have. There may be more symptoms that I just havn't retained from all the reading that I have done. She has an appointment to see a pediatric GI doctor.

I have had diarrhea problems as long as I can remember in my childhood. But it wasn't on a regular basis. 13 1/2 years ago when I had my son I became lactose intolerant. I have alot of the same symptoms as my daughter. Heart burn, Migrains, unexplained diarrhea (no dairy)

My main reason for thinking that we don't have celiac disease is the weight issue. I wouldn't call either of us fat but thin we are not. A lot of what I read is about people with a problem gaining weight. I have never had this problem. In fact it is hard for me to loose weight. I eat a lot of carbs and so does my daughter.

Does anyone have any info on this aspect of it? Non thin people with celiac disease?

Thank you to anyone who can help us.


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



Celiac.com Sponsor (A8-M):



rsavage Newbie

To The 2 of us.

You report symptoms that apear to be related to Celiac. Only a doctor can make that determination. Your concern about weight is really a non-concern. Many celiacs report that they were not bone thin. I too had difficulty losing weight all of my life. I believe it might be our bodies protecting us from the antibodies that we develop. It is not uncommon to develop lactose intolerance before bloating, gas, etc. The absorbtion of the lactose takes place, as I understand it, at the end of the villi. (the little fingerlike projections that absorb nutrients from the food into the intestine) Since the ends of the villi become damaged first, the lactose intolerance is noticable before other symptoms of glucose intolerance. Since this is as yet undiagnosed, it might be advisable to share w/ your md your concerns but do not allow yourself to be put off. You need to be tested especially since this seems to be a genetic problem. Frequently mothers of celiac children say that they were colicky babies. I don't know if that is true or just some passed on information. Unfortunately, doctors may not be as up on this disease as they would like. Perhaps others here can give you more information. In any case, good luck and God bless you 2. Royann :rolleyes:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,075
    • Most Online (within 30 mins)
      7,748

    Annevt
    Newest Member
    Annevt
    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

    • Wheatwacked
      Just switching to gluten free diet will answer your question without involving anyone else.  Your sister was diagnosed, that puts you at 40% risk of having it also as a first degree relative.  If you improve on a trial gluten free diet, you either have Celiac Disease (autoimmune) or Non Celiac Gluten Sensitivity (not autoimmune).  In any case it is important to address nutritional deficiencies like vitamin D.  Gluten free processed foods are not required to fortify.  The reason gluten foods are fortified is our western diet is deficient in them to the point where the government had to step in and require fortification.   Once you start GFD you'll realize it was the gluten you were afraid of all along, but nobody told you.
    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
×
×
  • Create New...