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Celiac And Ee
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We had an appointment with an ENT on Wednesday and may have found the best doc ever. Our 26 month old was sent to see this doc due to snoring, suspicions of apnea, and regression in eating. We were talking about her other health issues and mentioned she was gluten free because she had issues when she ate it such as constipation, rashes, screaming, and anemia. Told him our ped said to assume it was celiac, and he said if our ped ( who is also his kids ped!) said celiac it's celiac! Finally an official diagnosis for 1 of my little monkeys.

On the negative side he suspects EE, which I knew more about than the resident who was with him as our eldest was supposed to be scoped for it a 2 as well. We were just expecting to be told she need her tonsils and adenoids out. They also suspect central sleep apnea.

Anyone have a child diagnosed with EE this young?

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Our little one was so similar. She had ENT surgery at 15 months for sleep apnea, chronic sinus issues etc... When we saw our ent they got GI surgeon involved so they could scope during the surgery since he also suspected EE. In our case the scope result was negative for EE and positive for celiac. We are still unsure however if perhaps the EE triggers weren't there though as she is so much better with gluten free but still chokes frequently, gags and has some issues with eating. So there is still some suspicion of it I think?

The ENT here was pretty certain would be EE as he said "something" had to be making her adenoids and tonsils so huge... is that what your ent has said? Are you able to get scoping with the surgery? It was nice having all done at once.

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My daughter diagnosed as "probable" Celiac when she was 16 months old and then EE when she was 6.  She was too ill to be scoped for the Gold standard Celiac diagnoses.

 

Keep a food journal and also take note of airborn allergens.  Living with EE for 4 years has proven a seasonal allergen connection.  (Not allergy testing)  If there is an EE diagnoses you should be reffered to an allergist.  Please keep in mind EE is an auto-immune issue and not a true allergy.  "Triggers" (food or airborn) cause the immune system to produce eosinophils that, once activated are active for 12 days.  An endoscopy with biopsies needs to be done.  ("normal" looking tissue also needs to be biopsied as the eosinophils can be embedded and not visible to the scope.)

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Our ENT was really clued up about EE so hopefully he sends us to a gastro who is. The intern who did our initial consultation had never heard of it.

Her tonsils are normal size and the ENT said he won't remove her adenoids until he knows for sure it's obstructive apnea.

We already have an allergist, and she knows a lot about EE and she wanted our eldest scoped for it, do I know she'll push to get things done right.

We've already started a food diary. Seasonal a allergies being a trigger wouldn't surprise mits sneeze city between my eldest, their dad, and grandmother!

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Are they doing a full sleep study then for the apnea? For our daughter they also suspect some central sleep apnea but they felt adenoids still had some contribution so did remove adenoids and then will repeat the sleep study in may and if some apnea remains will start clap. As a mom don't like the delay in cpap! Don't like thinking of her jot getting enough oxygen regularly! But for us to be honest the adenoid removal doesn't seem to have had much effect to the naked eye on snoring or apnea as it still seems quite evident. So maybe a blessing to not have to do it yet. Especially if allergist is in tune! Hope you can sort some if it out quickly. It is tough waiting and coordinating these opinions etc...

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They want to do a sleep study before even thinking of surgery thankfully. Our ENT is firm on sleep study before surgery. She's lost weight so the allergist will definitely push for an EE investigation. Today she ate scrambled eggs and yogurt, everything else she was given she chewed and spat out.

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OK The chewing food and spitting it out can be a symptom of PICA.  (*Usually* the desire to eat non-food items caused by anemia.  This is the best scenario if she is just doing this with real food and not chewing drywall, dirt, and ??)  Get her iron levels checked.

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She was aneamic but her last iron levels were really good. The things she spits out 6 months ago she used to eat. After she spits things out she starts crying that she's hungry. pICA was discussed but last time she even licked walls, ate her shoes, her sister, anything was food to her and she ate it! There main reason for questioning EE is regression, everything she used to eat she no longer does, she wants to but she won't/can't. Yogurt and eggs disappear quickly, she had 2 scrambled eggs for lunch yesterday and a yogurt at bedtime. She was offered gluten free pizza, but all she did was pick everything off and lick of the tomato sauce.

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I wouldn't wait a day longer without working with a ped. gastro. and getting the endoscopy appointment.  (it can be a 3 month wait for finding a ped. gastro., but once your in the office the endoscopy gets scheduled right away.)

 

To answer another one of your questions, the tonsils are very enlarged for my daughter too.  It usually looks like she has strep throat.  Enlarged irritated tonsils (you can see blood vessels), creamy spots, and her breath smells like nasty pus.

 

I know you want to see her eat and you can't change her diet yet.  You can add chilled soothing things.  Slurpees and popscicles can help during the "worst time of day/evening".

 

The ped. gastro. does not consider the instant skin prick test for iron levels to be accurate at all.  At least you know about PICA.

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We are in canada so everything is done through referrals, so they are pushing things through as fast as they can. We know who we want to see. My eldest saw a gastro so the sibling connection helps speed things up as well. Also thankfully for kids they do a vial blood test for iron. It's just a waiting game waiting for departments to sort out things.

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Yes, my daughter did the spitting the food out too!  Wow!  They have many similarities so I have been following your thread!  Are they treating her for reflux at all?  My daughter had done the spitting it out, got better temporarily with going gluten free but then it emerged again, we went back to our pediatrician who is thinking it is reflux so she doesn't want to swallow because it hurts so he is treating her for reflux and she has stopped spitting the food out and appetite has improved again.  They also had her on the same meds for this prior to scoping for EE as the GI specialist wanted to make sure what he was seeing wasn't "just" reflux and she needed to be on it for a while, so if she is not being treated for that it might be worth asking the pediatrician about.

 

Hopefully your referrals go through quickly, and the same for the sleep study- that can be slow to arrange.  We had had ours done prior to seeing ENT through a pulmonologist- are you seeing one?  If they are thinking central sleep apnea it also is likely a specialist you should get started on a referral for if not.  I am in Canada too and the wait time for that specialist can wait at times...  

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We are in Vancouver bc children's does all the leg work, we are going to see a respirologist the ENT said it would be quick....hopefully

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

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Still waiting! And the last few days she has been pretty bad, of course probably because it's. Holiday weekend! They never get sick during normal office hours! She's had my mother in law freaked out a few times as she thought she was choking, guess a few phone calls are needed on Tuesday to chase up doctors.

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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!

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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