Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Help Me!
0

7 posts in this topic

I have a five year old son that has been having a strange array of issues since he was a baby. Of course the usual story was; I took him to see doctors and they said, "diarrhea and loose stools is sometimes normal in children". The latest doctor said, "sometimes children are just skinny". I finally did research myself and came to gluten as being a possibly. I asked the doctors to screen him for celiacs, but by this time I had already started tampering with his diet. He was still eating gluten, but not nearly as much. His first test came up positive for IgG, but negative for the others. After four-weeks of gluten-free diet he has gained 3lbs (more weight than he has gained in the last 2 years). For the first time ever in his life he is having a regular stool and all the symptoms have all but disappeared.

We also have a 7 month old baby girl who has had issues with constipation despite the fact that I am still breastfeeding. She also was having constant fussiness and we were beginning to be concerned that she might have a mental health issue because she wouldn't play with her toys, or allow me to put set her down. It finally occurred to me that she might be getting gluten or cesian through my breast milk. We immediately started her on soy formula and a day later noticed a drastic change in her temperament.

I am still dealing with these difficult doctors who don't seem to be very helpful. I am overwhelmed trying to figure out what to feed my family. I have not lost my milk yet, and I am not sure whether I should continue breastfeeding and go on a no-gluten diet myself or just switch her to formula. Any suggestions comments or good advice is much needed! Please help!

0

Share this post


Link to post
Share on other sites


Ads by Google:

The decision to breast feed or use formula is a very personal one.

My son wouldn't latch on as an infant, then I got mastitis (and decided to just formula feed him after it cleared up). He started life constipated, and d...so one day I had a freak out mommy moment and decided it was milk protein (stepson and hubs have/had milk issues). So I gave him formula for a few days while I went in a milk free diet - then soy free because the soy formula wasn't producing "perfect" bm 's either...

Anyway, i noticed he highly preferred pumped breast milk over any formula - it seemed easier on his stomach. But then again, he was a newborn not 7 months. The more casein free, soy free breast milk he got the better he was. I had to give up pumping around 7-8 months. I couldn't do it anymore. He was on Nutramiagen til 1, then I tried him in cows milk and he was fine. We always assumed milk protein intolerance, which they say usually heals by 1. Of course, now I wonder about gluten but so far he tests - and is pretty much symptom free.

They say milk protein doesn't pass through breast milk - but I talked to lots of moms that swear otherwise. They say the same about gluten - but only you can be the judge.

So, it's up to you. You do what's best for your family.

0

Share this post


Link to post
Share on other sites

The decision to breast feed or use formula is a very personal one.

My son wouldn't latch on as an infant, then I got mastitis (and decided to just formula feed him after it cleared up). He started life constipated, and d...so one day I had a freak out mommy moment and decided it was milk protein (stepson and hubs have/had milk issues). So I gave him formula for a few days while I went in a milk free diet - then soy free because the soy formula wasn't producing "perfect" bm 's either...

Anyway, i noticed he highly preferred pumped breast milk over any formula - it seemed easier on his stomach. But then again, he was a newborn not 7 months. The more casein free, soy free breast milk he got the better he was. I had to give up pumping around 7-8 months. I couldn't do it anymore. He was on Nutramiagen til 1, then I tried him in cows milk and he was fine. We always assumed milk protein intolerance, which they say usually heals by 1. Of course, now I wonder about gluten but so far he tests - and is pretty much symptom free.

They say milk protein doesn't pass through breast milk - but I talked to lots of moms that swear otherwise. They say the same about gluten - but only you can be the judge.

So, it's up to you. You do what's best for your family.

Thank You pricklypear! By the way I love the Pic!!

I too suffered from breast infections, 3 for my daughter. That is one reason why I don't want to give up breastfeeding her. Any mom who has gone through that knows how honorific it can be, so to have survived it three times in a period of two months or so was rough. However, after switching her to the formula she is so content and happy now, playing with her toys and learning like a normal baby. I already don't drink milk or eat cheese because my son and husband are both lactose intolerant. I see you're signature says something about genetic testing. How is that done? Does that determine whether you are celiac or if you are just pre-disposed to it?

0

Share this post


Link to post
Share on other sites

It is a very personal decision. I will say, I am a very strong believer in breast milk for babies.

I have been on some sort of elimination diet for 5 years now through 3 kids. The fist was the most difficult (more allergens and being a first time Mom just learning all this stuff!) Now, it's just life.

Breastmilk is best for babies. Even for babies with allergies, if the Mom removes them from her diet it is better than any formula. I also know life is hard and eliminating things may not be easy at all! It is tough. Again, as I sit here with baby #3 I still get cravings :)

Follow your gut! Hang in there. I know it's a tough decision~

0

Share this post


Link to post
Share on other sites

You could always try to go gluten free diet and see if it helps and then go from there. I can't imagine how it would hurt her in any way? I'm probably biased b/c I bf'd my son for 2 1/2 years. I was really glad that I had the opportunity to do that.

0

Share this post


Link to post
Share on other sites




Thank You pricklypear! By the way I love the Pic!!

I too suffered from breast infections, 3 for my daughter. That is one reason why I don't want to give up breastfeeding her. Any mom who has gone through that knows how honorific it can be, so to have survived it three times in a period of two months or so was rough. However, after switching her to the formula she is so content and happy now, playing with her toys and learning like a normal baby. I already don't drink milk or eat cheese because my son and husband are both lactose intolerant. I see you're signature says something about genetic testing. How is that done? Does that determine whether you are celiac or if you are just pre-disposed to it?

It is hard to watch your baby improve, and question whether you should do something that may change that.

I do suggest you get yourself tested before going gluten-free, if you haven't been tested already and are still on gluten, before you go gluten-free for breast feeding (if you decide to do that). celiac is genetic - so there's a chance you may have an issue, too, and if you go gluten-free you may not be able to go back on gluten for testing later.

Here's a link about celiac testing - the fact sheets explain genetic and antibody testing. http://www.cureceliacdisease.org/living-with-celiac/guide/fact-sheets

0

Share this post


Link to post
Share on other sites

Your story is all too familiar. I had to children in the early 80's and at that time docs said their throwing up was normal. Docs thought I wasn't burping them enough. Formula then was limited and of course there was no mention of allergies. However, I put my oldest on fresh goat's milk, we had goats at the time, and she did really well. Both girls now are dairy and gluten free.

I think you would be wise to follow your gut and change diets, even if tests do not show what you suspect. It could be that your son does not have an autoimmune disease but he may do better on a gluten-free and/or dairy free diet.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,695
    • Total Posts
      921,778
  • Topics

  • Posts

    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,700
    • Most Online
      3,093

    Newest Member
    JessZ08
    Joined