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
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    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

    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      All of a sudden I can't get any gluten-free nuts. There are only 2 nuts available that I can find on the market that are gluten-free. One is Mauna loa brand macadamia nuts, the other is Wonderful pistachios. Other than that all types of nuts that are plain nuts, roasted or raw are no longer gluten-free and are processed and plants that also process wheat.  Has anyone found a source for Pecans, almonds peanuts, walnuts, Pine nuts, etc that is gluten-free?
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      @Xravith, How are you doing?   Two cookies are not enough.  For testing, you need to be eating a minimum of ten grams of gluten for two weeks minimum before testing for Celiac antibodies.  Ten grams of gluten is roughly five or six slices of gluten containing bread per day for two weeks minimum. Breads that contain lots of gluten typically have large bubbles formed by gases escaping during baking.  Gluten helps form those bubbles of trapped gases, like a balloon.  Artisan breads, and thick, chewy pizza crust are good examples.  Look at the size of the bubbles in cakes and cookies.  Small bubbles, so not lots of gluten in them.  You'd have to eat tons of cookies to get ten grams.   Antibodies are made in the small intestine. If you eat at least TEN grams of gluten for at least two weeks, then there will be sufficient antibodies to move into the bloodstream, which can be measured in antibody tests.   If you eat less than ten grams of gluten daily, you will get celiac symptoms, but not enough antibodies will get into the bloodstream to be measured, resulting in false negatives.  Anemia, diabetes, and thiamine deficiency can also affect testing, resulting in false negatives. Since you are having such difficulty consuming sufficient quantities of gluten, you should consider getting a genetic test done.  You do not have to eat gluten to have a genetic test done.  Celiac is inherited.  It's in your genes.  Genes don't change whether you eat gluten or not.  A genetic test looks for the most common known Celiac genes.  If you do not have the genes, your doctor can look for other health conditions that can be causing symptoms.  If you do have Celiac genes, you can assume that those genes are actively causing symptoms.  An endoscopy to check for the amount of intestinal damage caused by Celiac Disease is usually done.   You should also be checked for nutritional deficiencies.  Ask for an Erythrocyte Transketolace Activity test, which checks for Thiamine deficiency.  Thiamine, Vitamin B 1, is one of the eight essential B vitamins.  Thiamine can become low quickly because our bodies use so much of it everyday.  If we're not replenishing Thiamine daily from our diet or because of malabsorption, we can become seriously ill.  Same with the other seven B vitamins.   Doctors are not familiar with nutritional deficiency symptoms as can occur in Celiac disease.  Please get checked for nutritional deficiencies.  Ask for the Erythrocyte Transketolace Activity test soon. Please let us know how you are doing.  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • 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.