momma bee

Better if i just remove response wow!

Thank you tarnalbenrry, I think putting it in writing is a good plan. I will try that tomorrow first thing in the morning.

Kareng all I can say is "wow"! Negligent? Wow!

Wow... Attempting to remove post

Can't tell you the chances but can say my daughter was 15 months on diagnosis, blood tests were ALL negative but had sufficient IGA. Her endoscopy clearly showed multiple signs of celiac. So I would think with that then even one positive would be best to confirm.

The scope itself is not that bad of an experience. She was drinking formula up until the early morning and was only without a short bit. They let me stay with her until they got her into the or (she was having other surgery) and until she was sedated. If they let you stay until they give her some sedation it is nice but prepare.yourself to walk away from your sedated baby for me that was the worst part (but also she was having exploratory surgery and an adenoidectomy so i was more on nerve for that). But then shortly after (it is a pretty quick procedure) she will be done the procedure and back to you, sleepy and wanting to cuddle and likely wanting a bottle. So not too bad over all!

The "worse" part is waiting for results. Not sure about elsewhere but here we waited a full week. Sometimes they see things before office all results.back but not always and our GI told us almost never in ones as little as this. But I guess in the end what is a week after all this time trying to figure out the problem etc...

Hope all goes well and smoothly!

I think he is not ruling it out yet or he wouldn't be doing the biopsy. Fantastic they can get it done so quickly! The scope itself can show other issues she is having if there are other issues so it is useful for more then celiac.

We were also told with our daughter being one year old the damage is less likely to be visual and after the scope the GI doc had thought it had looked fine, he said he might have noticed a "thickening" in one spot but it was very subjective. We were to call in after one week and get the results which us what we did. In our case we hadn't suspected celiac before the scope so when the scope was poaitive we went for blood after the scope and her blood all came back negative. So then they were perplexed as well but the scope showed many markers for celiac (there are several things they look for in the tissue to confirm diagnosis not just one). Then they sent us for the genetic tests to verify and they were positive for our daughter.

Our pediatrician has said that at this young of an age it is quite tricky to diagnose celiac and the paths to diagnosis will vary!

So i would anticipate they are still suspecting celiac and looking for it and you may also find they do the gene tests hla dq2 and dq 8 if my memory is right to confirm. And as you said, with her only eating 3 months now there may not be as much damage yet... Our GI was surprised there was given she had also only been "eating" a few months and I would say the term eating loosely as 95percent of the intake was bottles, we.could barely get her to eat food.

Hood luck with the scope Tuesday and hope it gives you a clear cut answer! Tough enough having a sick little one but so much harder not knowing why nor what to do!

That is great!!!

Awww that sucks! Hugs sent your way! Definitely better for your little one but so hard to wait longer fingers crossed! And hug to you to feel better!

That is great! Treatable! Hope resolves quickly!

We had the same tests run here on our family once our littlest one was diagnosed and we all came back negative as well (but hers had been negative as well)... I am wondering too if more tests need to be run to be sure! Seems odd and a bit un-nerving!

Good luck and let us know if they agree to run more tests in you all...I am thinking when finally meet the gi doc once the diagnosed one is over 6 months gluten free we can ask her about more testing so I would love to know what they recommend to you!

My little one was 16 months for hers and I was not keen on it, she was having adenoids out as well, but to be honest she did way better with it then my 3 year old! As mentioned, harder on you then her! She was similar in that could not get enough to eat and just wanted to cuddle and sleep. Slept a lot that day and cuddled a lot and was "normal" by the next day and that was with the adenoids surgery and exploration of sinuses as well... She had Tylenol for pain right after and for a few days, but if they had done just then scope they said she would likely only need one or 2 doses of plain Tylenol so not much pain to plan for.

My personal opinion and nit a medical one, but just as a.mom with a newly diagnosed baby too is that it is good to get it done and not need to do a gluten challenge down the road if there is any confusion and questions later... We had negative blood work but a positive biopsy and I must admit even 3 months later my mind still makes me think "what if it was wrong" so I am glad to have the biopsy results personally to be sure and keep us all committed to the gluten free life! But man have we seen good improvement in her! Wouldn't change back for anything now... Still struggling with her but she is so much happier and healthier already! I hope your daughter soon will be too!

And I agree that the earlier in the day the better so they don't keep her hungry for long!

Oh... Also just to add that if the plateleta are low or if there are irregularities in the CBC blood work the Dr can add on or send for more blood testing for sure, sometimes you don't even need to be poked again to do so. So they may get more platelet detail like the mean etc... They also might add in or order a peripheral smear which looks specifically at all the different blood cells more in detail. So if it does look towards low platelets there will likely be more blood to be looked at...

It is hard waiting for results! I can super relate these days myself! Spending hours in the lab each week getting blood draws myself, waiting for results (often never hear) and also still in process of my daughter new-ish celiac diagnosis and follow up for ongoing sleep apnea. We are still suspicious of EE in my daughter as well actually (19 months old) but the scopes in Feb did not show any. Time will tell!! So we can hang in there together trying to get to the root of our girls' problems!

That is rough... I send hugs too... I agree with nvsmomma that it doesn't really sound like it to me either but am very new to it. As she mentioned with itp it is usually diagnosed almost exclusively by platelet count alone and then other tests are used to veryify it is itp and that nothing else is causing the low platelet counts. So unless they are telling you she has low platelet counts then I would think not too likely to be the cause? I known for me and from reading other peoples stories with itp in general as soon as the cbc test came back with the platelets low enough to diagnose itp the drs told them right away the platelets were too low. They do that so you know to be careful not to hurt yourself and cause bleeding or bruising.

Again though..i'm not an expert and it is new-ishre to me but have done a lot of reading lately! My symptoms and onset and current issues are similar as described with heavy periods, bruises, nosebleeds that don't stop, and I felt dizzy and fatigued when the counts are at their lowest.

I will also add that "they" say the presentation in kids is often different then in adults though and is generally quite acute onset and goes away in general. So don't not ask the Dr about it on our account! At 10 she could be presenting quite different then me at 35 or I believe nvs would also have been a young adult! But fingers crossed not that or you'd know her platelet count!

Looking at the tests it does look like they are looking at a variety if other things so sure hoping they can figure it out quickly! So hard to have a sick child and not be able to do anything about it!!!

Thanks for all that info! And glad to hear the spleenectomy worked for you... Most internet/forum people active are ones where it didn't work and so was worrying me as heading that way too... Prednisone not helping so weaning and waiting... There are newer treatments but not good options for me as I have some blood marrow abnormalities... So thank you for the positive that yours worked...helps me!

And I will look into that connection too as it might impact me given thyroid history too... Thanks!

Sucks all these life experiences you have gone through... This too shall pass right?

Goodness... So many little things to think of! Wow! That makes total sense and is so sad when trying to do the right thing that it is not glad you guys posted this for everyone who wouldn't think of it!

Thanks for your reply. Sorry you have had such a complicates time if it!! I know they say the autoimmune issues run together and yours sounds like a classic case, I think perhaps mine as well now (had thyroid cancer in the past).

Think I shall push for the testing to be more sure.... Might as well, what's a little more blood on the daily draws! Thanks!

Glad to hear your itp resolved as well. Mine isn't responding to the prednisone now and they think maybe surgery soon but waiting and watching levels as I wean the prednisone. So nice to hear yours resolved!

Just curious but wondering if anyone out there now has or has had ITP? I am not celiac myself that I know if but am suspicious of it after my toddler was diagnosed in March. Our family all had "testing" but it was not the full panel and I am not sure it was sufficnet for any of us. For the last 6 weeks I have now had ITP (also autoimmune) and it has some cases linked to celiac patients being higher risk.

My big focus now is in treating the itp (which is essentially low platelets and causes bleeding) but I am trying to determine if I should also push for more testing for celiac as well if there is a relationship so am curious if anyone out there has both or knows of the relationship?

Thanks!

Yes, generally they recommend taking calcium one hour after almost any other meds as it interferes with many. So either one hour after or up four hours before other meds is often the recommendation.

It makes a significant difference in synthroid and thyroid meds for anyone on those!! So it is important for with other supplements but I wish would make more clear on the calcium itself as the pharmacist doesn't review it with you the way they do meds! And can make a huge difference!! I have made that mistake a few times I am sad to admit (think I would have learned the first time)!!

That is good then! Rules that out! Good.luck with the figuring it out! Always amazing how many things need to rule out!

Some of your symptoms could be related to your kidney function to so might want to check on that.if it hasnt been checked. Especially the foamy urine but some of the others are well! Might be unrelated but worth checking!

Hi Morgans Mom... Sounds a lot like my daughter who was diagnosed at 17 months. Her blood work was negative but she was having surgery for her adenoids and I had a goods ENT surgeon who was suspicious of either esophageal eosinophilia or celiac and got a GI surgeon to do a scope. Had we not had that we would not have known. I hadn't gone gluten free at all before but the issues with weight and the doubling over in pain for sure which i really could not phathom at that age my daughter had also virtually stopped growing at 9 months... Similar weights and everything!

Feel fortunate myself we had that Dr who got it investigated! Might have gone through years never even suspecting! Hope you have success with getting her tested! And fingers crossed it is an easy diagnosis and not these complicated some positive sine negative some unclear! At their age the blood tests are unreliable...

The other thing is that she needs to be injesting gluten for the testing to be done.. So the sooner the better before she is off it long?

Sorry, I might have confused it... She is 19 months old. She was diagnosed by a GI surgeon who did a scope Feb 14th while she was having an adenoidectomy and has been gluten free since we got he results early march. She has never had constipation issues, always frequent loose stools. We have yet to see a GI specialist about the celiac diagnosis, we got a phone call back telling us the results. We will apparently get a new GI specialist appointment after she has been gluten free for 6 months but so far not much medical guidance from a physician. She sees a pulmonologist about her other issues and this is who has ordered the iron as she thinks low iron is contributing to her overall health including the pulmonary and sleep issues and she still chokes a lot.

At 19 months she should be more milk and not formula but we cannot get her to take in a lot of food, she is small for her age and we wanted her to get the iron... Not sure that is the right decision but no guidance otherwise her pediatrician does not want to deal with anything celiac as he said the gi specialist will

I am presuming the iron is causing the problem since time of starting correlated but perhaps it is something else too? Maybe the being gluten free?

My little one is now 19 months old, was diagnosed about 3 months ago now. Her iron levels have been low since before diagnosis but were not treated as weren't "too low". We switched from milk (which we worried was making her worse anyways) to formula to add in some iron but her pulmonologust just started her on iron supplement in addition to the formula with iron. Since she has started it she is now suffering from constipation and get backed up to the point of projectile committing everything she has taken in. Then, she commits and pukes and is good for a day buy the one after that same thing occurs.

Anyone else had this problem with iron? Any ideas of how to better manage it for her? I am trying to give lots more water and juice and increased her veggies but she really is not much if an eater, especially with this tummy trouble any other parents with kids on iron with similar problems or advice?

Hate seeing her in so much pain and hate to see the food we work so hard to get her to take in to just come back out!

That sounds so horrible, I am sorry you had to go through that! Glad they were able to get samples still so can hope that can assist and make it all for something!

Aw that sucks! The wait is hard for all of these things! My daughter has been worse the last few weeks and the pulmonologist thinks perhaps is seasonal allergies with EE that just didn't show. And we just repeated her sleep study poat-op now so that was reminding me of you! I hope the referals speed up for you!!! And as you said, always gets worse on the weekends! And especially the long ones. Hope the referrals speed up, the waiting is the worst!

Was hopeful you have made progress in your referrals and testing!