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

Not Sure Where I Belong?


Rook's Mommy

Recommended Posts

Rook's Mommy Apprentice

My ds is three months old. He has been very fussy and has so much gas. He also has a rash on his face, arms and legs. He is breastfeed as well. We were told that I should try cutting out eggs, dairy. It didn't help. My mom saw something on the boob tube about wheat intolerance. So after much reading and talking to his doctor (who told me to just put him on formula) I gave up gluten 2 days ago. I am not sure if it's in my head but he seems so much better. The brightness of his rash has left and we have only had two small crying jags. I have to wonder if it is a fluke or if it's working?

Any how, I have been looking at the site and

i don't know where I should post. I don't have the intolerance, but I do have to eat the diet. Any help I'd be ever so thankful for. I have so many ?'s.

Thanks,

Addie :lol:


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



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

Welcome! How wonderful that you are such a caring mother - your son is lucky to have you! Yes, you are very welcome here. There are other mothers who will chime in who have done the same thing as you're doing.

Ursa Major Collaborator

Hi Addie, and welcome to this board. I doubt that it is a fluke that your son seems to be doing better. Many other breastfeeding mothers had the same experience as you, that their babies started getting better immediately after they eliminated gluten (or other allergens) from their diet.

You can post on the "Parents of kids or babies with celiac disease" forum for more responses from other parents.

Keep up the good work! And don't be shy to ask any questions that come up, there is no such a thing as a dumb question here.

Rook's Mommy Apprentice

Thank you both so much. I will check out the forum thanks a bunch.

GFBetsy Rookie

Just wanted to add that your baby's picture is darling!

Also, If you are looking for help on the diet, check out the recipes section on the main celiac.com site. There's also a lot of good "getting started" information on www.eatingglutenfree.com. Also, nini (on this forum) has a "newbie" package that can be found by clicking on the link under one of her posts . . . if you use the search bar at the top of this page and type in "nini newbie", I'm sure it will bring up a link to one of her posts.

Good luck, and I hope your son's improvement continues!

happygirl Collaborator

Addie:

Sweet, sweet picture!

Welcome to the board. If gluten is the problem----you are in the right place. If you need substitutions for things---let us know.

Try Tinkyada (rice) pasta....it comes in all shapes/sizes. Having a safe pasta (and this one is GOOD!) made such a difference for me.

Best of luck :) :) :)

Laura

Rook's Mommy Apprentice

Thank you for the compliment. He was three weeks old there. He is three months now. Time flies..

I am going to look for the pasta. We tried some last night. It was ok. Not great, but I could get use to it. Dh even ate it. I picked up Living gluten-free for dummies yesterday. Stayed up until one reading it. I am still a little lost.

Oh and Rook's rash is back, is that normal? He was looking great. I thought that it might have been the fruit cocktail I ate last night. But I can't find anything about it. I am hoping this doesn't extend to dairy. Eggs I could do with out for the most party, but I cook a lot with milk. And adore ice cream. I just hope it's something that can happen until he is fully healed or what ever. I did forget his lotion yesterday. Maybe that is is.


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



Celiac.com Sponsor (A8-M):



plantime Contributor

Addie, you can post anywhere on the board you want to. Please do not feel restricted to one section! There are many good mommies on the board that have been through what you are now going through. Give them some time, and I'm sure some of them will chime in.

Ursa Major Collaborator

Addie, unfortunately, many people with celiac disease are also intolerant to all dairy. My oldest daughter had to stop having dairy for four out of her five children when breastfeeding, because they are casein intolerant and were getting terrible eczema. When she eliminated dairy from her diet, the baby's skin would clear up. You may have to switch to things like sherbet as a substitute for ice cream.

blueeyedmanda Community Regular

Welcome Addie, you will find so much help here. What an adorable little baby :)

jukie Rookie

Welcome, Addie...what an awesome mom you are! My 5 y.o. son had a very difficult infancy that, in restrospect, was likely related his/my food intolerances. Although I was able to identify and eliminate some of the things in my diet that he was reacting to while breastfeeding (which included dairy and eggs), we didn't discover that we were also gluten intolerant until just this year. It breaks my heart thinking about how difficult those first years were...if only we'd known. Anyway, he continued to be lactose intolerant until he was about 3.5 y.o., but is now able to tolerate milk products with no problems.

I also wanted to mention that the Tinkyada pastas come in white rice, brown rice, and organic brown rice versions. Don't know which one you tried, but it may be worth experimenting with the others to see if they are more to your liking. (I personally found the brown rice version much more to my liking than the others.)

You have found a wonderful resource in this board...feel free to jump in anywhere!

Rook's Mommy Apprentice

I can't believe how nice everyone here is. I have posted other place and it just doesn't seem active.

Here is our progress so far. We figured out why he got his rash back the last few days, cheese! I didn't have the wrapper anymore but thought it was safe because it was brick, I went to my mother's last night and went through all her food. ( After reading what I was showing them, they decided to become a gluten-free friendly home for their grandkids, and because it may help my moms RA) As it happens we eat the same brand cheese. It has wheat in it. So I came home and moved it to the gluten shelve of the firdge. I am really shocked at the learning curve. I there is so much to know.

Yesterday I went to the co-op and they were super helpful. They gave me a list of what every gluten-free item in the store was. Then asked if I wanted to be shown where they were. AMAZING! At the market you can't find any one to show where to find crap. We decide to try a few things. Not much mind you, it's awful pricey. But I got tortilla shells, because I already promised my dh that we'd have taco's tonight. Hopefully that goes well. He tried Amy's mac and cheese last night. That was not a hit by any means. It's was quite gross to the truth. :wacko:

Now this is the part I can't believe, the difference it's made for Me! I have always had headaches daily for years, they are gone. I have always had joint pain in my knees, it's gone. My eczema is gone down a lot. And I haven't had stomach issues in 2 days. No icky feeling after eating that I normally get. In my dd I noticed she seems to be listening better. I haven't had to repeat myself twelve hundred times.

I am sorry this as turned into a book. I just wanted to tell you why I am so thankful. You have made my switch so much easier with the links, ideas and support. I the part I can't believe is the support I am getting from most of my family. My mom went to a gluten-free bakery with me and my kids yesterday. I and we were both blown away by how good it was. My dd had her first cup cake. She loved it!

Oh and one more thing, I couldn't find Tinkydada noodles any where at the co-op. Do I have to order it on line?

plantime Contributor

Wow, the changes your family is experiencing are awesome! I don't know where to find Tinkyada pasta, I use Mrs. Leeper's corn pasta. Glutenfree pasta is not cooked the same way as wheat pasta. For the Mrs. Leeper's, I bring the water to a boil, add the pasta, and set the timer for 7 minutes for rotini--8 minutes for elbows and spaghetti. As soon as the timer buzzes, the pasta must be drained. If you cook it longer or leave it in the hot water, it turns to mush. It also does not reheat well.

Was your mom diagnosed with RA via bloodtest? I was diagnosed via x-rays, but it turned out the damage was caused by celiac disease. The damage to my knees stopped when I went glutenfree. Shame joint damage doesn't reverse itself!

Rook's Mommy Apprentice

My mom was diagnosed 11 years ago, but misdiagnosed for 10 years before that. Hers is very advanced. I have prayed everyday for something to help her. She is on so many drugs including shots. She has so many signs of celiac, we've been told were side effects of the drugs. It really has me wondering! I hope they are really going to give this a shot. It's good to know it worked for you.

Nic Collaborator

I tried going to the Tinyada web site and ordering but you can't, unless I just don't know how. I also tried e mailing them twice about ordering because I wanted their grande shells to make stuffed shells with. They never responded. If you have a trader joes by you their brown rice pasta is as good if not better, just a little stickier when cooking so be careful. My son has not taken to the gluten-free macs and cheeses also. What I do is make gluten-free pasta and then use the cheese sauce from Kraft. My son does not have any dairy problems and I double checked with Kraft that the cheese was gluten free. So it tastes just like how he remembers mac and cheese to tastet.

Nicole

Rook's Mommy Apprentice

Thanks for the mac and cheese tip. My dh will be thrilled. :lol:

jukie Rookie

A couple places you can find some of the Tinkyada pastas online include:

www.allergygrocer.com

www.shopbydiet.com

Hope that helps!

kbtoyssni Contributor

There are lots of other good pastas out there, too. I always get DeBoles brand (I think that's how you spell it - it's in a blue box). I think I must be the only person on this board with this opinion, but I don't think Tinkyada is better than other pastas. DeBoles is just as good to me.

And feel free to post where ever you think the topic fits best!

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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

    • Total Members
      132,916
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.