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

Questions about what our son's gastro told us...

SiandAshs Mom

Recommended Posts

SiandAshs Mom Apprentice
SiandAshs Mom
Posted

Hello all.

My 7 y/o son has been struggling with chronic constipation since he started solid foods. He has been on PEG (miralax, restoralax) for a couple years and we have had to continually up the dosage to keep him somewhat regular. His paediatrician tested him for TTG IgA (he was negative) as well as thyroid tests (also negative). 

We were referred to a paediatric gastroenterologist to ensure there was nothing concerning causing the constipation. I myself have been gluten free for approx. 9 months and feel so much better (celiac blood tests were all negative for me too). I asked the gastro if there is a possibility that non-celiac gluten intolerance could be the cause of my little guy's problems. 

She said it definitely could be but she did not recommend a gluten-free trial. She said elimination diets can actually cause a person to become more allergic/sensitive to the food they are eliminating. I had never heard of this before. She said since the 'celiac' intestinal damage isn't occurring, the elimination carries more risk than benefit. Does anyone know of research that states this is true? 

Thanks for your input :)

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

"She said elimination diets can actually cause a person to become more allergic/sensitive to the food they are eliminating."

When that happens we call it being 'glutened'.  In most cases people don't react to something they haven't eaten in a while for no reason,IMHO.  Can you get a second opinion? In a child so young it can be important to get a diagnosis so they can be kept safe in school, if hospitalized etc.

You're in a tough spot and you have my sympathy. It is hard when our children are having problems.

SiandAshs Mom Apprentice
SiandAshs Mom
Posted
  • Author
22 minutes ago, ravenwoodglass said:

When that happens we call it being 'glutened'.  In most cases people don't react to something they haven't eaten in a while for no reason,IMHO. 

Thanks for your input ravenwoodglass. I thought the same thing but she caused me to question that.

In all fairness, she did say that an elimination diet may be a good idea in the future - she just felt that he could be missing out on some vital nutrients while growing if we did an elimination diet now. Also, she suggested that we waited until he was off of the PEG laxative as we wouldn't really know if it was the diet or the PEG that was helping at this point.

I wouldn't wish celiac disease on anyone but it would almost be easier to have a clear-cut diagnosis. He may do much better gluten-free but when you have the medical establishment (and family) against an elimination diet then it becomes pretty much impossible. I don't think our doctor would ever consider referring us to another specialist for a second opinion - in his mind it is not at all diet related so it would be a waste of time and resources. We're in Canada so I can't just get an appointment for him myself. 

Not sure what to do now but I appreciate your help :)

Jkta Rookie
Jkta
Posted

My daughter also had constipation issues when she was younger and needed laxatives to help. She is now 9, has both hypothyroidism and most likely celiacs.  She has her endoscopy next Tuesday.  And we are also in Canada.

I found that what she really needed was to drink more water and that really helped her constipation.  It was a puzzle at the beginning as to why she was constipated...she ate all her fruits and veggies, we ate whole grain breads and cereals, she had plenty of fibre in her diet.  In the end, we replaced her fluid intake with more water, less milk and if she had cheese she would need to drink a glass of water because we found the cheese to be constipating.  She has been off laxatives for about 4 years.  I hope that might help you.  

stephm Rookie
stephm
Posted

Not quite sure if I can help but my experiences have been somewhat similar. 

I'd been struggling with extremely dry skin/scalp and thought it could be due to fat malabsorption/ my body absorbing it and not using it. So I tried going off gluten for 2-4 weeks and back on it. After I went back on gluten, I started noticing significant differences in my stools (gross, I know, and I'm sorry) - but after eliminating gluten again (~3 weeks in) they would normalize. This also came in addition to a rash that my current PC doctor said might be dh.

So I never had any problems related to digestive before taking out gluten, but now it's a huge change. And after being on gluten for ~2 months, I also start to get constipation, which is odd. So perhaps your son's pediatrician could be onto something, but it is definitely worth getting a second, or third opinion - I'm in Canada too, and with a new PC doctor I've been seeing he's taking my symptoms seriously and has given me a referral to a GI. 

SiandAshs Mom Apprentice
SiandAshs Mom
Posted
  • Author
On 11/22/2016 at 0:52 AM, Jkta said:

I found that what she really needed was to drink more water and that really helped her constipation. 

Thanks Jkta. Yes, it always seems like a struggle to get him to drink water! That is definitely something we need to work on - I'm sure it would help. All the best with your daughter - I hope the endoscopy goes well.

SiandAshs Mom Apprentice
SiandAshs Mom
Posted
  • Author
On 11/24/2016 at 6:21 PM, stephm said:

Not quite sure if I can help but my experiences have been somewhat similar. 

I'd been struggling with extremely dry skin/scalp and thought it could be due to fat malabsorption/ my body absorbing it and not using it. So I tried going off gluten for 2-4 weeks and back on it. After I went back on gluten, I started noticing significant differences in my stools (gross, I know, and I'm sorry) - but after eliminating gluten again (~3 weeks in) they would normalize. This also came in addition to a rash that my current PC doctor said might be dh.

So I never had any problems related to digestive before taking out gluten, but now it's a huge change. And after being on gluten for ~2 months, I also start to get constipation, which is odd. So perhaps your son's pediatrician could be onto something, but it is definitely worth getting a second, or third opinion - I'm in Canada too, and with a new PC doctor I've been seeing he's taking my symptoms seriously and has given me a referral to a GI. 

Thanks stephm. My son also has extremely dry skin (it flares into full blown eczema at times). He licks his lips when he's nervous and gets a huge angry red rash around his mouth almost instantly - I can tell if he's stressed by the rash around his mouth! Never thought it could be related to fat malabsorption but that makes sense.

Interesting that your digestive symptoms crept in after eliminating gluten... certainly lines up with what our doc told us, doesn't it? I'm thinking we'll maybe try a gluten free diet after we wean him off of the laxative and see what happens. We unfortunately don't have the option of seeing another doctor so we'll be left trying to figure it out on our own. I'm glad you found a doctor that is taking you seriously - I hope the GI you see takes you seriously as well. Best of luck!

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.

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


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.