With that we have switched to the Gluten Free life

Question

Thank you so much for the add! I am in need of some advice. My son will be 4 next month. His primary physician who is a Gastro specialist diagnosed him with Celiac in March. With that we have switched to the Gluten Free life to the fullest and any time my son comes in contact it is almost an immediate response. I have waited 6 months to see a specialist and the appointment was yesterday and with that he stated that he saw no issues with my sons blood work and he had no idea why we were there. He said he does NOT have Celiac. Now I am a single mother. I have sold most of my belongings to provide all new non gluten contaminated kitchen ware in my home, and he has not had an episode since May.

WHAT do I do? They said to introduce Gluten slowly, but ya’ll I can not afford for him to be sick in order to SEE if he has this or not. However, I get no aide or help with food for him. I also have my 1 year old on a gluten free diet and myself because to me it is easier to maintain the cross contamination as well as I know that personally I feel better and with my daughter I can not bare to imagine her going through what my son has had to endure. Please let me know any feedback, any similar instances, advise, anything. I have no parents and no support here where I live and my son’s father only sees that he no longer needs to buy expensive groceries or thinks I over reacted about the whole thing. Thank you all so much! I will attach a photo of him in active “celiac” and now. He has gained 15 pounds and he is so happy and healthy!


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Amber 3 years 26 Answers 405 views 0

Answers ( 26 )

  1. Thank you Admin!

  2. Perhaps the new blood test showed “normal” because he has been gluten free for 6 months?? I’m new to this so I don’t have any other advice but as a mom I would go with my gut feeling – no pun intended, and go with what you feel is best for your family. Have you talked to the first doctor that diagnosed him with what the new doctor has now said? I would and see what his/her opinion is. Your son definitely looks like a happy kid, great job mom!

  3. Thank you Seriously your kind words made me smile! These were the ORIGINAL labs that the doctor even diagnosed him with from February. His IgA level was a little abnormal and that was it. nothing that qualified as Celiac. My gut tells me I want to slap the first doctor haha! As great as he is he made me feel like an idiot in all honesty

  4. I say if you feel better and your child is better keep doing what you are

  5. What about school and such and having a 504 form? Do I just eat that cost and TELL them he has an issue? I think I have like a boundry issue. I grew up in an abusive home. I had mucheisen Syndrome. Only reversed my mother would MAKE me ill to get things for herself. I have a record filled with diseases I never had. With that I just maybe am fearing that I am making my son ill if that makes any sense?

  6. If all the tests are negative for celiac but he still reacts so positively to being gluten free, he may be gluten intolerant. Just like you wouldn’t give a child with lactose intolerance a glass of milk you also wouldn’t give a child with gluten intolerance a slice of normal bread.

  7. He’s been gluten free for 6 months. Of course the blood work will be negative. The second doctor (specialist) should know that.

  8. this was the original diagnosing bloodwork. that was what I said too lol

  9. I am sorry you are going through this.. Stay strong and I suggest keep doing gluten free…

  10. My daughter is 3 and has Celiac Disease. She was diagnosed with blood test but they did an endoscopy with biopsy to confirm. That gives the 100% for sure diagnosis. He could still have an intolerance to gluten and large amounts of dairy.

  11. Seriously you all have given me a world of help! Like I felt like I was going nuts

  12. Why did the first Dr diagnose him with celiac? What parameters and testing did he do?

  13. A blood test and then the symptoms.

  14. I know you don’t like your son to get sick. But if it was me, I would make another appointment, then have your son ingest something with gluten right in front of the doctor. You said his reaction to it is almost immediate. Show the doctor what is going on with your son. I absolutely hate when doctors look at you like you are crazy. You’re a good mom. Just do what you know is best for your son. He’s a cutie.

  15. Thank you Karyn Watson Brown I suspect Gastroperisis with him too which is why its so immediate. none of us digest food properly. Even I only poop once, MAYBE twice every 2 weeks. It is terrible.

  16. You’re a great mom for going to bat for your kid! Props to you! From my experience, he could have a severe sensitivity to gluten or other foods but not necessarily celiac. Stay gluten free and keep looking for other food sensitivities. Relax. Doctors have limited experience and knowledge of the bigger picture. I’m a mother of 3 kids with issues that turned around from going gluten free. They were not celiac but sensitive. One kid was not college bound due to ADD, now has a BA and a masters degree, graduating Summa Cum Laude, GPA of 3.92 in both degrees! I could tell you stories.

  17. Wow! That is amazing!!! I feel like I get so much Sh*t because it is a “fad” to be gluten free. Like I felt like we were validated from every angle when it came to the diagnosis. now its like… just a slap in the face and I am made to seem insane. Like, I remember living up in NJ and this being more common but in Alabama I am like an alien and nothing is worth fighting for here

  18. Oh wow, so sorry you are going through all this! Maybe go back to NJ? ? My sister is there and I agree that they are way better at understanding intolerances/allergies etc. It sounds like he may have NCGI, Non-Celiac Gluten Intolerant. It’s getting more and more common. If your family has a history of celiacs it’s also possible he has the gene, but it hasn’t “switched on” yet. It can switch on at any moment (often after something stressful), but until then you may still get sick from gluten, just not exactly the same reaction you would after the gene switches on (antibodies attaching intestines). Hope I’m making sense lol

  19. Stick with gf!

  20. No question, stay with the gluten-free diet. Your son looks so happy and healthy now, why go back to the look of him in the picture on the left? I can’t understand the statements of the second doctor you saw, and I would not go back to him. I am so proud of you for being such a loving mom that you would do anything to afford the costs of gluten-free food. That’s pure love and your kids are both so lucky to have you as their mom!

  21. Can you go see another specialist? I would not reintroduce gluten, especially after he has been gf for so long. The reaction gets so so much worse.

  22. Do what is best for your family.

  23. If your son has been on a gf diet the test could be a false negative that’s why our doc made sure we didn’t go off gluten before any testing. we were actually told to up the gluten for the endoscopy just to make sure it was really in his system. If you feel it has helped I would keep it up. Your he momma you know your kids on a day to day. A dr only sees them for mins at a time over the course of a year. Go with your “gut” pun intended

  24. The whole family feels better – what else do you need? Keep up the good work – trust your gut!

  25. If he was happier and healthier stick with the gf diet. What was the specialist appointment for? If he hasn’t had gluten in 6 months any test they would of done would say he don’t have it. You have to consume gluten for 4-6 weeks prior to any testing for a positive test result.

  26. Dr Alessio Fasano at Boston is the leader in Celiac research especially for pediatrics. Most doctors are absolute idiots. And the knowledge in the medical field is so behind. I am planning to go to Boston with my 20 year old. He is too sick and too many doctors don’t know what they are doing.Spirit airlines flies there for about 50 bucks and Ronald McDonald house is free to stay at. If you want real answers, consider going? 😊

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