Waiting On Test Results

[brileighlevi]

Hi! I'm new here. My daughter is currently being tested for celiac disease at my request. She's had bad gastro issues including encopresis at around 3 years old and off/on constipation for years. It's been treated by doctors with Miralax and fiber supplements but it's never made much of a difference and obviously isn't making it disappear. She's also always been small but has reached a point where she's had nearly zero growth for a year or more. She's 8 (bday in Aug) at 49" tall and weighs 46# (up to 48# on one day at the doctor). This leaves her in the 8% for height and 4% for weight for her age. She has a host of other things wrong with her including fatigue, dry/brittle hair that falls out, white spots/decalcification on her teeth (showed up one very first baby tooth, been present all her life), joint pain, tingling hands legs and feet, bloating, gas, acid reflux/heartburn, occasional hoarseness, and nausea. I found a pediatric gastroenterologist that would see her with no referral and started testing in Nov. A endoscopy and sigmoidoscopy (sp?) showed small intestine inflammation that "could" be a sign of celiac although they ruled out everything else. They did blood work that they say came back negative for celiac but are now going to run a full celiac panel with genetic markers. We actually had blood work drawn last week but the lab screwed up and reran the tests originally done and now I have to take her back in for more blood work. I'm calling tomorrow to insist they send me copies of all tests run so I can look at it and get numbers. They did diagnose her with lactose intolerance. The doctor says she isn't sure about the celiac but that they have ruled out everything else although she "could just have IBS." ???? I don't see how that is even possible or would cause all her symptoms. I'm really stressed right now especially with them messing up her tests. I knew this would be a long road going in but it's turning out to be more stressful than I expected. I almost wish now that I'd just gone gluten free instead of going to the doctors first .

[mall]

I am so sorry that you are going through this! My three year old has had some of the same issues as your daughter and it can be a very hard process but she did eventually get a diagnosis and is now doing much better. My prayers are with you! 

[brileighlevi]

Thank you for the support and concern. I'm glad you got an answer for your little girl! I don't know what's going on with mine. The doctor seems to think it isn't celiac but it's the only thing I've come up with so far that could potentially explain all her symptoms. She also has some cold intolerance and weird smelling breath (even after brushing, mouthwash, anything) that I forgot to mention in my first post. I got the doctor to send me reports of what has been done so far although we're still waiting to run genetic tests and some other tests. Here's what we've got so far:

 

Iga    151 mg/DL

Tissue Transglutaminase Iga    <1 u/mL

TSH    3.35 mcIU/mL

 

They also did a serum CMP. The doctor says that it doesn't show celiac but they're going to run the genetic tests and see what they say because of her inflammation. I looked at her charts online though and they listed her conditions as LLQ pain, constipation, periumbilical pain, and duodenitis. They however didn't list the lactose intolerance they said she had??? I'm so confused. I know something is wrong and no one else seems to care.

[frieze]

that TSH is high, that could explain the dry brittle hair.

and, of course, that is very incomplete testing.

[brileighlevi]

Is that high? I thought so but the doctor didn't mention it and I wasn't sure. Of course we're seeing a gastro not and endocrinologist so that may be why she didn't say anything. What should it be? Do you have any ideas or suggestions on what to do to find out more about that? 

 

I got the lab orders in today. They've ordered a gliadin Ab and GIA celiac genetics (HLA typing for celiac disease). Is this sufficient or is there anything else I need to request before they do the blood draw? Thanks so much for the replies and help. I knew from lurking on this board that this would be a long process and I had *some* idea of what I was getting into but I'm still lost as to what to do with testing and such.

[brileighlevi]

They also ordered a anti endomysial antibody screen. Is this with the other tests they set up going to make for complete testing? I want to make sure that they get everything since this will be the 3rd time doing blood work that my daughter hates. I don't want to put her through it again for one more silly test or something. Thanks so much for the help everyone. It's making me feel better just to have someone to talk to about this stuff.

[GF Lover]

I would also request that she be tested for nutritional deficiencies if you haven't already.  That will be an important part of the puzzle.

 

Good Luck to you,

 

Colleen

[StephanieL]

I *believe* TSH's should be closer to 1 but values will vary by lab.  I would ask for a FULL thyroid test including T3, T4 and free T3 and T4 as well to get a full picture.

[africanqueen99]

As a former Thyroid Cancer patient I know way too much about TSH.  It is currently recommended that patients be between .1-1.0 to be in the normal range.  "Old School" doctors say anything below 3.0.  "Super Old School" recommend below 7.0.

 

To keep the cancer from regrowing my TSH is kept at .01 and that's my normal - I'm pretty sure that I'd be showing some really horrible side effects at 3+ - cranky, foggy brained, exhausted.

 

My seven year old also went over a year of no growth (in fact she lost weight during that time).  That was the serious clue to push her over into the celiac DX.

[StephanieL]

Thanks for the clarification on the TSH levels.  I know when I was questioning thyroid issues with DS (after guidance from here thank goodness!)  I called the two endocrinology departments and asked what the reference ranges were for TSH.  One was .5-5   one was .5-2 I think which was closer to what I was looking for. Needless to say we went with the second

[brileighlevi]

Thanks so much for the helpful info on the TSH! I'll definitely be getting the other tests done. I am hoping to get a full nutritional panel soon as well. I'm not sure how helpful her primary is going to be with this but I may use AnyLabTestNow. They offer all of those tests. I definitlely want to get the thyroid checked now. I wasn't sure how likely it was for her to have hypo type thyroid issues and still be as tiny as she is.

 

We had our labs drawn yesterday and are back on the wait. Results should be in within 2 weeks. I'm going to check on those other tests now though. Thanks everyone! It really helps ease this mama's mind to have experienced mamas to consult!

[brileighlevi]

We got results back today. They said her antibodies are normal and she doesn't have any genetic markers for celiac disease. So no celiac. The nurse seemed happy like this was a good thing but I'm concerned now because I don't know where else to turn.

[GottaSki]

We got results back today. They said her antibodies are normal and she doesn't have any genetic markers for celiac disease. So no celiac. The nurse seemed happy like this was a good thing but I'm concerned now because I don't know where else to turn.

 

Now that testing is complete....I strongly suggest you remove all gluten for at least three months due to the inflammation of the small intestine and symptoms.

 

Non-Celiac Gluten Sensitivity has many of the same symptoms as Celiac, but there is no test other than elimination of gluten to monitor for symptom improvement.

 

Hang in there

[nvsmom]

I agree with Lisa, try the gluten-free diet for 3-6 months and see what happens.  My kids tested negative too but they had health issues so we tried the diet anyways. Their health has obviously improved and behaviour changed as well. NCGS can really impact a child's health, just like celiac disease can... that inflammation can really mess up one's health.

 

Keep a symptom and food journal to help you keep track of changes.  Best wishes.

[brileighlevi]

We started yesterday. I haven't switched out dishes or anything though for cc. I did buy her new tupperware containers for her breakfast, lunch, and snack at school. We started recording food and notes on sleep or pains and such yesterday. I don't know what else to do.

[GottaSki]

Journaling food & symptoms is a big undertaking....thankfully it is worth the effort to weed out possible dietary solutions to health issues.

There is no need to replace dishes, utensils or most cookware. Nonstick pans, toaster, cutting board, colander should be avoided.

If you haven't - give the Newbie 101 thread a good read. I'm on mobile version...so let us know if you the link.

Hang in there

[nvsmom]

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Best wishes.

[GottaSki]

Thanks Nicole