Extremely Confused

[averyevansmom]

I heard from Children's yesterday via voice mail. They reviewed my sons biopsy slides and had the same findings of inflammation of the duodenum (small intenstine) as Hasbro. However, when I do speak to the Dr. I will mention that when the doctor performing the biopsy at Hasbro came out of the operating room, she told my husband and I that she saw 3 white lesions (spots) and a LOT of inflammation. Anyway, he mentioned on my voice mail doing more testing. I have no idea what that means since every possible blood test that I know of has been performed. (I think). I hope he's not suggesting another endoscopy. He has responded so well to the diet that I shudder to think of putting him back on gluten. It would kill me. He never complains of belly aches anymore and the only time he has a bad poop is when he accidently gets gluten or has dairy or yogurt (is yogurt considered dairy) the dietician says it should be okay. I'm so scared I'm having anxity attacks. I feel like I'm starting at square one. I don't want him to suffer. I feel bad enough when he has a pasty sticky poop because he cries and screams when I have to wipe him. He fights so hard. Maybe I should be looking at something else. The doctors have no answers, he has no food allergies, so I have no idea what direction I should be going. I'm really scared for him. My well being is taking a real hard hit. I suffer from clinical depression and this only makes it worse, not to mention the fact that my family feels my anxiety and frustration. And my son shouldn't have to suffer for doctors mistakes. Boston Children's is very knowledgable in Celiac and has a Clinic so I really don't understand. Am I a one of THOSE kinds of mothers. God I hope not. Please help.

[mmaccartney]

My heart and prayers go out to you. Having a sick child is a very hard, trying thing to deal with.

Yogurt is absolutely Dairy, (BUT my GI told me I could have that and cheese what a riot!). Avoid it. If your son cannot have dairy, avoid anything with milk, casien, lactos, whey, and there are more. Though you indicate no food allergy, here is some good information on the hidden sources of milk: Open Original Shared Link

My sons (4 and 3) have severe food allergies, the oldest is anaphylatically allergic to peanuts and tree nuts, allergic to milk, eggs, wheat, dogs, and fish. I also believe he has Celiac disease (from me). He's also a vegetarian by his own choice, not relevant but I'm proud of him for finding his values so early on and sticking with him. The youngest is allergic to milk and eggs.

We are still dealing with the "my tummy hurts" all the time. Currently we have begun an elimination diet to identify what is left in his diet that is causing him problems. I pray that it is NOT Corn of Soy, they are the staples of his diet, his primary protein source, and his favorite food items!!!

It makes me sad and depressed to be sick myself when I get glutened or ingest dairy, but to see my little ones sick is 100 times worse.

my opinion, if you know in your heart and mind that gluten is a major problem for your son, forget the doctors and the test. I would not ingest gluten for the sake of a positive test at this point, my original testing got messed up since I went gluten free before being fully tested and diagnosed...but SO WHAT! I was dying, slowly, and painfully. When I changed my diet, I began to get better within days. A few days after going gluten free and feeling better I ate a Wheat Waffle just to see, and back came the arthritis, the abdominal pain, my diarrhea, vomiting, etc. DONE! I made my own diagnosis....

besides, my Rheumotologist's mother had celiac disease so she is quite knowledgeable about it, told me one time "Why do you want further testing, you know that you had a positive response to the diet, and even had some bloodwork come back funny. You know how to get better, what would more testing really tell you?" Now, she isn't a Celiac specialist, but she deals with digestive issues all the time, and her own mother had Celiac, and she is an medical doctor.

So, my opionion....avoid milk at all costs, and don't go further with testing if it requires posioning your son. If the response to the diet is positive and he is getting better, thank your God (or Higher Power) and move on towards a healthy life for him.

IF your son, later in life, feelds the need to go on a "gluten challenge" and have further testing, let him make that choice...and you'll never feel guilty about that!

Also another option, have genetic testing done, this requires no gluten ingestion!

Good luck, and keep us all posted...

[Guest nini]

my daughter did not have a biopsy, and her bloodwork was inconclusive... I knew in my heart that gluten was her problem and when I took gluten out of her diet, her health improved miraculously.

You do not need to put him through any more testing. You already have your answer. Gluten is a serious problem for him. It does not matter one whit if it is Celiac or just Gluten Intolerance, the treatment is exactly the same. Keep him gluten free and get him healthy and stop worrying about it. My daughter has been gluten free for almost 3 years now and she knows when she gets exposed to gluten, it makes her tummy hurt and she get's D, and sometimes even breaks out in hives. Her pediatrician finally acknoweledged that she is Celiac by POSITIVE DIETARY RESPONSE and the fact that I have it.

[chrissy]

our ped gi said that inflamation is something you would see with celiac.

christine

[averyevansmom]

Thank you Michael and Nisla

Just spoke to the doctor and reiterated what the Hasbro doc told me after the biopsy and he thought it was interesting, especially the white lesions. I also asked if everything was non-positive, why was Evan responding so well to the diet. He was surprised to hear that. He said that was pretty much a confirmation. He was also considering inflammatory bowel disease but it requires a different diet. He said to get the numbers of the tTG and the other blood test that was done so he can see just how negative they were and the gene test should be done within the next week or so. We see him for a follow-up on 3/16. He said while Evan was young to just assume and treat him as though he has Celiac's and when he gets older, if we want to do more testing, we can. So the yogurt's a no no? He does want to do some follow up bloodwork. I just hope they will give him a diagnosis if all else but the diet is negative.

Thanks again to everyone for your encouraging words and thoughtfulness.

Becky

[averyevansmom]

Chrissy

Funny, you must have been replying the same time I was. I thought inflammation was thought to be found with celiac. Thanks. Wanted to make sure it was something I didn't just make up. Evan (Bubba) had a nice BM tonight.Yeah. This a.m not so much, could've be residual yogurt in his system though. Do any of you or your kids have "normal" bm's every time?

[mmaccartney]

So the yogurt's a no no?

Becky

If dairy is a problem (casien or lactose) then yogurt is out. There are soy yogurts available if he can tolerate soy. Check into it, I like to eat a kind I get at Trader Joes, as well as a kind produced by Silk Open Original Shared Link

If ice cream is something he'll miss, there are many soy ice creams out there. I like the kind from Turtle Mountain the best as they actually test their batches for contamination!!!

Open Original Shared Link

[lbsteenwyk]

This is regarding the yogurt question -

Many people with newly diagnosed celiac disease are lactose intolerant, simply due to malabsorption caused by the celiac disease. When the intestine heals, the lactose intolerance may resolve too. So, I would take your son off dairy for 3-6 months and then reintroduce dairy slowly. Start with lower lactose products like cheese or yogurt and see what his response is. He may not need to be on a dairy free diet permanently.