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

Help With Severe Malabsorption


newgfmommy

Recommended Posts

newgfmommy Newbie

Hi, I posted a few days ago and since then took my 2 yr old son back to the GI doc to see if we could get referred to a dietician and maybe an immunologist. Anyway, the GI was not helpful and now i am even more frustrated! The doc said that his Enterolab malabsorption result of 1245 was ok and that it's fine that he is losing some fat in his stools. :o This does not sound right to me. Could someone please help me decide what is best to do next. I am thinking of finding an Immunologist and Dietician for my son, but need to know what to suggest to them that he get tested for. Through Enterolab he was also found to have a casein sensitivity, maybe others to look for? Should they do skin tests, or what else? PLEASE HELP, I AM VERY WORRIED FOR MY SON. He has been recently having more loose stools after 3 months of gluten free diet and getting better. He also has gotten more whiny and fatigued easily lately. I have more confidence in the information from this forum that the "medical professionals"! THANK YOU IN ADVANCE FOR ALL YOUR HELP!


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



Celiac.com Sponsor (A8-M):



CathyM Newbie
Hi, I posted a few days ago and since then took my 2 yr old son back to the GI doc to see if we could get referred to a dietician and maybe an immunologist. Anyway, the GI was not helpful and now i am even more frustrated! The doc said that his Enterolab malabsorption result of 1245 was ok and that it's fine that he is losing some fat in his stools. :o This does not sound right to me. Could someone please help me decide what is best to do next. I am thinking of finding an Immunologist and Dietician for my son, but need to know what to suggest to them that he get tested for. Through Enterolab he was also found to have a casein sensitivity, maybe others to look for? Should they do skin tests, or what else? PLEASE HELP, I AM VERY WORRIED FOR MY SON. He has been recently having more loose stools after 3 months of gluten free diet and getting better. He also has gotten more whiny and fatigued easily lately. I have more confidence in the information from this forum that the "medical professionals"! THANK YOU IN ADVANCE FOR ALL YOUR HELP!

Look on the Autism Institute website for a D.A.N. link, which will be a list of all DAN (Defeat Autism Now) doctors in the country by State. These doctors are specially trained to deal with the problems your son is having and know things regular GP and GI doctors do not. These DAN doctors will treat anyone, not just children with ASD.

RiceGuy Collaborator

Well, I can't help you with what tests to ask for, but I'm sure many other members can and will.

As for the malabsorption, it can take time, and it is important to stick with foods which are easily digestible. Use a blender to puree as many things as you can. There may be some digestive enzymes and probiotics for children his age which could help. Avoid hard to digest things like meats, dairy, nuts, beans, soy, etc.

Sometime there can be loose stools for awhile at the beginning of the gluten-free diet, but it should settle down after awhile. The length of time is likely to vary somewhat from person to person. Go through all his foods and double check labels, call the companies, etc. Obviously, make sure he's not getting gluten from CC. Even shampoo, dish soaps, etc.

I hope your son feels better soon!

newgfmommy Newbie

Thank you so much! I will check it out.

Look on the Autism Institute website for a D.A.N. link, which will be a list of all DAN (Defeat Autism Now) doctors in the country by State. These doctors are specially trained to deal with the problems your son is having and know things regular GP and GI doctors do not. These DAN doctors will treat anyone, not just children with ASD.
newgfmommy Newbie

Thank you for the reply, I was wondering about probiotics as well. I have not read enough about digestive enzymes, have you used them? What is their role in this, replenish nutrients? Would you recommend no eggs as well? We are trying to use whole foods only, but he loves the gluten free cereals! His diet mostly consists of applesauce, bananas, grapes (he LOVES them), squash, potatoes, rice, and we have given him some chicken and fish. I am struggling with how to feed him and the rest of the family (I'm pregnant, an almost 4 year old and husband with family history of heart and cholesterol issues) effectively. We have all been eating pretty much the same things, because it is too hard to tell my 2 year old he can't have what everyone else is having over and over. He has been great with most of it, though, I just feel bad for him. Anyway, I also am not certain his hygiene products are safe. I will need to research that. As far as CC, we have been trying to add only cookware for him, and have separate condiments for just him. I am trying to schedule an appointment with a dietitian who specializes in Celiac diets.

I hope to get somewhere with this soon. Thanks again for the suggestions, I will try the blender and check on the hygiene products.

Well, I can't help you with what tests to ask for, but I'm sure many other members can and will.

As for the malabsorption, it can take time, and it is important to stick with foods which are easily digestible. Use a blender to puree as many things as you can. There may be some digestive enzymes and probiotics for children his age which could help. Avoid hard to digest things like meats, dairy, nuts, beans, soy, etc.

Sometime there can be loose stools for awhile at the beginning of the gluten-free diet, but it should settle down after awhile. The length of time is likely to vary somewhat from person to person. Go through all his foods and double check labels, call the companies, etc. Obviously, make sure he's not getting gluten from CC. Even shampoo, dish soaps, etc.

I hope your son feels better soon!

mftnchn Explorer

I agree about the DAN doctors, hopefully they can really help with the gut issues.

Also the "easy to digest" is important, I think, as well. However, I think meat isn't really hard to digest like the other things mentioned above.

You might check out www.pecanbread.com. It is dedicated to SCD approach, but that is also gluten-free. The kids on it have needed more help than just gluten-free, and it is working very well for many of them. Mainly it will eliminate the potato and rice from the list you mentioned. The website has some good suggestions for casein free, and there is a whole wealth of stories and comments on how to address difficulties.

I can't speak to the malaborption in a little one, but have had it myself. I have had to do a LOT of supplementation and finally go to shots of B vitamins, magnesium, and glutathione to bypass the gut and give my body some of what it needs. It just so happens that my main doctor is a DAN doctor too, and I have benefited from all the knowledge he has gained treating little ones.

In terms of fixing something everyone can eat together, that is a challenge. The only thing I can think of is to have dinner in "courses" where you eat together with your 2 year old first, then when he is finished and playing, have your second course. I think different families have managed with different solutions.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.