The Waiting Game

[Birdie19]

Hi -

I am looking for thoughts, my daughter had a biopsy on Monday and we are waiting for the results of the biopsy. Last week her TTGA came back at 12.8 and her IgG came back at 7.1. Our pediatrician is very concerned however the GI specialist made me feel like I was stupid for being concerned or worried about this. My husband is also in the process of getting tested his TTGA and IgG came back negative and the GI wants to scope him anyway.

We have a family history of Celiac. My husband's mother has been a Celiac for 20 years and as my husband's GI said, Ireland (where he is from) is a hot bed for Celiac disease.

I can't wait any longer, why do these test results take so long? Can you have an elevated TTGA and IGG and not have Celiac disease?

If the biopsy comes back negative would you still do a celiac diet?

My daughters symptoms include: constipation, weight gain, severe distention and bloating, she is otherwise a normal health 3.5 year old.

Thanks,

A mother who is DONE waiting!

[pricklypear1971]

If her blood work and endoscopy are done why wait?

Sure, they'll say "wait and see", but really... what other test is going gluten-free going to affect?

And IMO, yes, if her test is negative (and get copies of all the lab tests and reports) I'd try gluten-free. I'm sure you've read stories here about how damage is missed, etc. With a family history of Celiac you definitely owe the diet a try.

Just keep loading Hubs with gluten til his scope is over.

[sa1937]

I agree with Prickly...have your daughter go gluten-free now but keep loading up Hubs until he's had his scope.

The biopsies have to be sent to the lab and examined by a pathologist under a microscope. I think mine took a week or so to get the results.

[Birdie19]

What is the likelohood that she is not Celiac? I don't really want to put her on the diet if we don't have to....

[mushroom]

About a 20% chance of a false negative ; chance of a true negative unknown. Chances she is celiac very high. Chances she is gluten intolerant - almost 100%.

[Birdie19]

Why do you think def gluten intolerant? Labs?

((I know it may seem like redundancy but I am at the stage where I have been told so many different things repetition works for me!))

[scstampin]

I don't have any words of advice to offer, just understanding, as I am in the same boat as well. My 3 1/2 year old daughter had a positive blood test last week, and she just had her endoscopy today. We started gluten free today as soon as her biopsy was done. We feel like the sooner we can get her healing, the better.

But we have also contemplated, what do we do if the biopsy is negative? With her high ttg levels and her symptoms, I think I will be skeptical. Her ttg level was 64 and we were told normal range was 0-3. Her symptoms are similar as well, severe constipation, distention and bloating, and low iron. But like you, we want to know for sure before we would make her go completely gluten free.

The hard part is that she has a twin, and 2 other siblings, and we have to keep them ON gluten until we find out if she has it so we can have blood tests done on them, but we decided to take her OFF gluten as we wait for the results. We asked our pediatrician if she would do the blood test on them once we found out her's was positive, but she said she won't until we get the biopsy result. So by the time we get the result, get them blood tested, and get the results for them, it will be weeks of making separate food for her and them. UGH!

Anyway, I hope all goes well for you and that you get your results SOON! The waiting is not easy! Please keep us updated!

[Birdie19]

Wow, that seems stressful. Even tonight her stomach is so distended, she did need to use the potty but even after that it was distended not as severe but pretty bad. Maybe we should start the diet sooner. My husband was wanting to wait for the results but I guess we could start now. Do your kids go to daycare? My daycare told me I will have to provide all the food now, which is fine just time consuming. I go to school full time, work part time and our lives are chaos, I can't imagine restricting everyone's diet now.

Of course I will do it, just venting. Ugh!

[scstampin]

Yea, I hear ya! It is overwhelming and I am sure will take a lot of planning, especially going to school and working as you figure it all out, but at least we have support here right as we learn!?

My kids are not in daycare; I stay home with them. My daughter and her twin will be in preschool next year, so I am thankful to have the summer to figure this all out before they are in school.

Our daughter's GI told us it was up to us if we started the gluten free diet right away or if we wanted to wait for the results, but she did say based on her blood test she thought the biopsy would probably be positive, so we decided to start right away.

[Sesara]

We have our endoscopy/biopsy scheduled for next Tuesday for my DS, and pretty much are planning to start a gluten-free diet as soon as the biopsy is over. If it fixes nothing, and the test results come back negative, then we can re-evaluate, but my thought is definitely to get him healing as quickly as possible. While we were in referral limbo, we did gluten-free for a week with him, and while I didn't see any real improvement in his stools, I do believe that his behavior and sleep issues improved drastically, and only lately have returned to being as bad as they were before our gluten-free week. So I am hoping that going off gluten will rapidly show the same marked level of improvement - in 21 months, the only time he has ever STTN was at the end of that week, though I didn't connect it at the time.

[Birdie19]

Hmmm, I can't decide if our GI is just a jerk or our numbers really are borderline and not sure if it is Celiac. She was at 12.8 and the physician was behaving like I was pushing for somehting that wasn't necessary.

He said "if she is Celiac then it is just starting because I have seen these numbers in the hundreds"

I guess this is what is making me so reluctant to start the diet because he is making me feel like I am doing something could be totally unnecessary for my child.

OMG bed time that isn't a battle would be awesome! 90% of the time child behaves like she is ready to jump out of her skin. Like her body is so activated that she can't control it and doesn't know what to do about it.

[MitziG]

False positive blood tests are very, very rare. It is very likely her biopsy will be negative however as celiac is patchy and easy to miss.

Do her a huge favor, and go gluten free today. She has Celiac, whether it is advanced or not, and her health issues will become myriad if you don't address it now.

It seems overwhelming, I know. Myself and both kids have it. At first it seemed almost cruel.

But now I don't believe gluten is healthy for anyone. And the majority of gluten people in this country eat is processed, sugar and fat laden junk food. Your daughter will not be harmed by having processed foods removed from her life and taught to love REAL food.

My two cents, having been there, and done that!

[mushroom]

You did not mention the ranges the lab uses in grading her scores. This can make a lot of difference to the results. The numbers are not absolute - each lab establishes their own ranges, so it would be important to see where her numbers fall in the negative, equivocal and positive ranges. If you don't know, get a copy of the report.

[Birdie19]

Sorry, here is the reference ranges.....

She tested 12.8 for TTGA <10 is considered normal, > 10 = suggestive of Celiac Disease

IgG level was 7.1, normal is considered less an 7

And her biopsy just came back NEGATIVE.

So now what? Do I take her to an allergist? Or should I try the diet? Or should I forget it an move on?

[frieze]

Hi -

I am looking for thoughts, my daughter had a biopsy on Monday and we are waiting for the results of the biopsy. Last week her TTGA came back at 12.8 and her IgG came back at 7.1. Our pediatrician is very concerned however the GI specialist made me feel like I was stupid for being concerned or worried about this. My husband is also in the process of getting tested his TTGA and IgG came back negative and the GI wants to scope him anyway.

We have a family history of Celiac. My husband's mother has been a Celiac for 20 years and as my husband's GI said, Ireland (where he is from) is a hot bed for Celiac disease.

I can't wait any longer, why do these test results take so long? Can you have an elevated TTGA and IGG and not have Celiac disease?

If the biopsy comes back negative would you still do a celiac diet?

My daughters symptoms include: constipation, weight gain, severe distention and bloating, she is otherwise a normal health 3.5 year old.

Thanks,

A mother who is DONE waiting!

two different GIs, I take it? what are the ranges on that lab work?

[Birdie19]

Lab ranges posted above, post had to go to a moderator first (as I am new).

Yes, it is different GI docs.

The test was negative, now what? Allergist?

The GI was saying if it is negative that he would wait another 6 months have her tested again (lab work).

[Cara in Boston]

The range is there for a reason. You child is out of range - therefor it is a positive test result. Who cares if the idiot doctor has seen worse cases? Does he want you to wait until your child gets worse? A child SHOULD have lower numbers because (hopefully) they haven't been walking around for 10 years damaging their systems while doctors try to figure it out. A positive result is a positive result. The fact that she also has symptoms makes it pretty clear.

Go gluten free now (testing is done, you are just waiting for results) and stick with it regardless of what the biopsy says. You will see a difference. She is (at the very least) gluten intolerant.

Hang in there. It is a very confusing and frustrating process. Trust your instincts and keep looking until you have answers.

Cara

[Birdie19]

Can you have a false positive with the blood work?

Is it possible to have high blood levels and NOT have celiac?

[mamaupupup]

I ditto what Cara said!

I have one Celiac child whose TTG doubled in three months and was just UNDER the top of the "normal" range and the excellent Ped GI we have said a rapidly increasing TTG is enough to cause alarm. She is symptomatic and has a twin with Celiac, has the genes herself, has two parents with genes, two cousins with Celiac, does better off gluten. The new-ish pediatric guidelines are more flexible (allow more judgement on the part of GIs) to diagnose Celiac based on "directionally correct" information.

Also, I could have written this about our other Celiac twin: "90% of the time child behaves like she is ready to jump out of her skin. Like her body is so activated that she can't control it and doesn't know what to do about it." We have now been gluten-free for two months and we see significant improvement.

I personally believe more in TTG as a guideline than I do endoscopies.

I also believe you're being a great parent and identifying something very early. Good for you!

[Takala]

Can you have a false positive with the blood work?

Is it possible to have high blood levels and NOT have celiac?

It is highly unlikely.

The symptoms match celiac. The family history says much higher probability than general population.

It is the only auto immune disease whose symptoms can be controlled by a diet change. You've dodged a bullet if you can stop the complications from developing now.

Or I could give you a list of what she has to look forward to.

Gall bladder and liver disease

thyroid disease

overweight from slow thyroid

higher probability of developing diabetes

insulin resistance, PCOS

infertility

bone loss

small for age, short height

lots of cavities

crowded teeth

malnutrition, > low in iron, B vitamins, D, and those complications

rashes and skin break outs, including acne cysts (oh, what fun !)

heartburn, GERD

nausea and puking

chronic constipation

chronic diarrhea

alternating C or D, mistaken for "IBS"

"fibro" inflammation

arthritis

asthma

ataxia (loss of balance)

neurological damage

brain damage

[Birdie19]

I am worried, what if I am missing something, what if it is some other autoimmune disorder?

Juvenile Diabetes

Arthritis: There doesn't seem to be anything that would indicate this.....but she is a child who gives me very little symptoms.

Irritable Bowel Disease: However with this, she doesn't have the diaherria piece, or any blood in the stool or anything that would indicate it.

I am not kidding this child gives me NO symptoms. She had pneumonia last week and I had no idea. The only thing that was a little off was her behavior. She was acting really really naughty. Other than that no fever, no coughing, no NOTHING!

My gut feeling is that it is Celiac disease, but I am up against my husband who says it is not, the GI who was a COMPLETE jerk and family/friends some for it some against it.

My plan is....1. talk to our pediatrician tomorrow and see where we go from here. 2. Call and request a consulate visit with a different GI in the group. 3. Convince my husband to trial the diet with her.

I think regardless I want to trial the diet, however before I do I want to make sure we have looked all the possibilities of things it could be in case we need to have more labs that require a gluten containing diet.

What about seeing an allergist? Helpful, not helpful?

Thank you everyone I do appreciate the comments. It is a really scary thing to embark on and I feel a little crazy and partially like a stupid push mom, but the reality is who else is going to do it?

[Cara in Boston]

I totally understand you wanting to make sure it is not something else.

You can go Gluten Free and still look for other causes. Being gluten free will not affect the outcome of any other tests (other than celiac/gluten intolerance) so you can do both at the same time.

Try the diet (strict) for three months. Keep a log of symptoms (including behavior) - I just used a calendar and jotted down notes for each day. The improvement may be gradual and therefor hard to see at first. After three months, reintroduce gluten and keep the log . . . again, the reaction might be gradual, but eventually, the symptoms will return. If you don't track it, sometimes it is hard to see the changes.

I think it would be hard to keep your child 100% gluten free if your husband is not on board. Make sure he understands that the trial diet can (and should) be considered another form of testing for GI/celiac disease. You will not see a clear picture if mistakes are made . . .

With her symptoms and family history, seems like an allergist is not necessary. But, it won't hurt and it may put your mind at ease by eliminating other possibilities.

Cara

[mamaupupup]

I agree with Cara (wish you were my next door neighbor!).

Also, we have an excellent pediatric GI in Los Angeles--Dr. Michelle Pietzak. She is also a Celiac researcher. If you live within driveable distance to a Celiac research center, go there. If you are willing to let me know what area you live in, I'll do some legwork on which pediatric GI is well respected.

My husband was critical at first...now he checks the labels on things I bring home from the store!!!

[mamaupupup]

I should add:

We have fraternal twin girls with Celiac. I couldn't have figured out our puzzle without a great GI. We travel 100+ miles each way to see her.

- Before we found our awesome GI, our symptomatic daughter came back with a negative Celiac panel (I had restricted her gluten intake). At that point (since she was negative for Celiac) I let her have as much gluten as she wanted (except dinner because she'd be up multiple times a night with joint pain and muscle pain). Our local (fine, but not stellar GI) asked us to do a Rheumatology panel to rule out arthritis. Arthritis came back negative. I also did extensive allergy testing via both bloodwork and scratch tests. All were negative. Then I did bloodwork to see if she even had the Celiac genes and I also retested the Celiac panel. Her TTG doubled in three months. Then I found our great GI. Still, for this kiddo she was a subtle, non-classical Celiac presentation. Other doctors wouldn't have "gotten" her symptoms and we'd still be wondering...it really helped ME (and my husband) to rule out other things.

- I thought one was asymptomatic. Turns out that I had tuned out a lot (not proud of it!). She had said, "my belly aches" every day for probably 2.5 years. I'd ask her if she it would help to poop, tinkle, eat, or vomit and it didn't... Then she'd move on to the next activity. She was also a fairly volatile kid (with hindsight: on gluten). I think she stopped telling me symptoms because telling me wasn't helping her. Now that she is gluten free and our awesome GI helped me differentiate types of belly aches and address all the known issues she has (Celiac, gastritis, low digestive enzymes), my daughter is able to tell me what's going on, we talk about it, she listens to her body more (she stops eating things that hurt her belly, she tinkles when she needs to, she poops when she needs to...). She's a much happier and healthier child. I couldn't have figured this out without an excellent pediatric GI.

So, yes, re-emphasizing what Cara said:

- Go gluten-free and document document document

- Test all you want/need to in order to rule out other things

And, really important: find a VERY Celiac-knowledgeable GI.

Keep us posted!

[Birdie19]

Thank you all really! We live in St Paul, Minnesota. We live in St Paul and both work in Minneapolis. So if you know any doctors in this area that we should try, I am all ears!

I had a break through with my husband today. We have a plan, a new plan! I am very excited. Because I was nearly in tears Wednesday night with how distended our daughter's stomach was. It looked really sore. She stooled normally the day before and right after I took the picture she stooled normally but that's the point, it was NORMAL consistency and she was NOT constipated but everyone chalks it up to constipation. SHE WASN'T CONSTIPATED the stool was NORMAL! Totally normal. That amount of bloating is crazy. I have a 3 year old wearing 6X clothes because her tummy is so distended.

I too think my daughter doesn't tell me. I think she has always had this and by the time she became verbal enough to tell me, I had ignored it. She was colic, when she was really little she alternated between diarrhea and constipation, this isn't new for her. Most days I feel like she wants to jump out of her skin because she doesn't know how to handle it. - I am getting off track here. the plan... the NEW PLAN!

Plan

1. Talk to our pediatrician (who is wonderful): did this, this morning (she is going to call the GI and talk to one she knows there and get her opinion on N's symptoms) Including why is the labs elevated then? She too is concerned about my kiddos issues, those lab levels ARE NOT NORMAL. She agrees, it's not normal.

2. Our ped is going to rule out some other autoimmune disorders (RA, Diabetes, etc)

3. We are going to trial a diet and per the above recommendations we are going to keep a diary. Home and at daycare, symptoms etc.

4. I have ANOTHER consulate with a diff GI, same clinic on Tuesday. My husband and I agreed to get another opinion regardless of what our doctor turns up.