Waiting On Daughters Biopsy Results, And Have A Question.

[mom2J]

Hi,

 

So this is my very first post on this forum.  I am anxiously awaiting the results of my daughters biopsy.  Here's a little history, and I do have one question.  She became "sick" with vague, non specific symptoms almost a year ago.  Episodes of feeling awful (fatigue, dizzy, nausea, headache and a couple of times throwing up with no clear understanding why).  We took her to Dr, and she had blood work done that revealed she has autoimmune Hashimoto's thyroiditis.  (she is 12 years old)  It took a good 8 months to find the right dose of medication for her, as she kept swinging back and forth from hypo to hyperthyroid.  After blood tests consistently revealed that her thyroid was under control, but she was still feeling miserable with almost daily episodes of similar symptoms listed above…we took her back for further testing.  She had a celiac panel done about two months ago that revealed  high levels of tTG-IgA (her # was over 120). They didn't do any of the other tests.  She had her biopsy on Monday.  Path report won't be back for a week or so.  My question is that the doctor showed us pictures of the area where he saw some abnormalities. In the duodenal bulb and duodenum.  The abnormality was numerous nodules.  He said sometimes they see this in celiac patients but won't know for sure until path report comes back.  I was wondering if any of you had similar initial findings from the endoscopy, and if this is a clue that she has celiac.  I know I only have a few days to wait, but its killing me… Other symptoms she has are: difficulty gaining weight (has been around 80 lbs for over  year now), no exercise tolerance, anxiety, severe eczema on her hands, bloating after eating…will eat just a small amount and feel full too soon, etc..  She doesn't have any classic symptoms of abdominal cramping, diarrhea etc..the only gastrointestinal symptoms are the nausea and bloating…  Her doctor has said that he has seen some cases of patients with other auto-immune disorders show high levels of the tTG-IgA with no evidence of celiac on biopsy, and due to her "non-specific" symptoms and the absence of abdominal pain/cramping and diarrhea, he won't say that this is likely Celiac until after path report comes back.  We hope she doesn't have it, but it would be nice to have a solid answer.  Anyway, I guess I am mostly just sharing our story, but would love any feedback if anyone has anything to share.  

 

Thanks in Advance,

[GottaSki]

FWIW...I'd guess she has celiac disease and if the doctor was not convinced with the extremely high tTG-IgA and damage noted during the endoscopy I would ask why he did not run the rest of the celiac antibody tests.  Did she have any nutrients tested?

 

Hang in there Mom and J!  Hopefully, the doctor will receive information from the pathology report that will help him better help your daughter.

 

Make sure you request written or electronic copies of her blood work along with both procedural and pathology reports from the endoscopy.

 

Lastly, not all people with Celiac Disease have obvious digestive symptoms.  There are over 300 symptoms associated with Celiac Disease.

 

Good Luck

[Fenrir]

I'm fairly confident that if the tTG IgA is positive that the biopsies will be also. What you describe is something they can see where a patient has a sever reaction (even for Celiacs) to gluten. I didn't have nodules but was never the less the biopsies showed celiac. 

 

Nothing is 100% bit that tTG IgA is pretty darn accurate and given the nodules it is pretty likely celiac. 

 

Keep in mind, as a physician, your doctor isn't likely to tell you one way or the other until they have the results in their hands because they don't want to tell you one thing and have it turn out to be wrong. I don't read what your dr. said as saying she does or does not have celiac, which is appropriate given the pending biopsy. 

[mom2J]

Thank you for the replies.  I appreciate it.  No she has not had any blood work to check for nutrient levels.  She has had a couple of complete blood count tests the last few weeks to follow an abnormally low WBC count as well as a high lymphocyte count.  In doing these tests, we do know that she does not have anemia. Her lymphocyte count came back down to normal on the second test, but WBC is still low.  I am not sure why they only did the one celiac blood test.  It was her endocrinologist who follows her thyroid that ordered the test, not the GI dr.  I guess the GI Dr didn't feel it was necessary to do more blood work ….?  He just recommended getting the biopsy at that point.  If it comes back pos. for celiac, should I still ask for nutrient blood tests?  We were given permission to remove gluten from her diet after the biopsy was done, and the GI Dr said he recommends she meet with their nutritionist if the biopsy comes back positive for celiac.

[Fenrir]

Thank you for the replies.  I appreciate it.  No she has not had any blood work to check for nutrient levels.  She has had a couple of complete blood count tests the last few weeks to follow an abnormally low WBC count as well as a high lymphocyte count.  In doing these tests, we do know that she does not have anemia. Her lymphocyte count came back down to normal on the second test, but WBC is still low.  I am not sure why they only did the one celiac blood test.  It was her endocrinologist who follows her thyroid that ordered the test, not the GI dr.  I guess the GI Dr didn't feel it was necessary to do more blood work ….?  He just recommended getting the biopsy at that point.  If it comes back pos. for celiac, should I still ask for nutrient blood tests?  We were given permission to remove gluten from her diet after the biopsy was done, and the GI Dr said he recommends she meet with their nutritionist if the biopsy comes back positive for celiac.

Typically if they do a tTG IgA and it is positive they're going to do the biopsy no matter what the other labs say so it seems OK, IMO, to not do more testing. The mere presence of Celiac antibodies is enough to warrant a biopsy. 

[GottaSki]

Thank you for the replies.  I appreciate it.  No she has not had any blood work to check for nutrient levels.  She has had a couple of complete blood count tests the last few weeks to follow an abnormally low WBC count as well as a high lymphocyte count.  In doing these tests, we do know that she does not have anemia. Her lymphocyte count came back down to normal on the second test, but WBC is still low.  I am not sure why they only did the one celiac blood test.  It was her endocrinologist who follows her thyroid that ordered the test, not the GI dr.  I guess the GI Dr didn't feel it was necessary to do more blood work ….?  He just recommended getting the biopsy at that point.  If it comes back pos. for celiac, should I still ask for nutrient blood tests?  We were given permission to remove gluten from her diet after the biopsy was done, and the GI Dr said he recommends she meet with their nutritionist if the biopsy comes back positive for celiac.

 

In my opinion, having the complete antibody panel run at diagnosis is important. 

 

This starting data can not be replicated.  If these tests are not run, there is nothing to compare the follow up blood tests needed to manage celiac disease - especially in children.  A complete antibody panel should be done at 3mo, 6mo and annually thereafter once the antibodies return to normal levels with gluten removal.

[Fenrir]

In my opinion, having the complete antibody panel run at diagnosis is important. 

 

This starting data can not be replicated.  If these tests are not run, there is nothing to compare the follow up blood tests needed to manage celiac disease - especially in children.  A complete antibody panel should be done at 3mo, 6mo and annually thereafter once the antibodies return to normal levels with gluten removal.

Sure, for monitoring if in fact she has Celiac (pretty likely) it would definitely be good. However, I just meant for purpose of diagnosis they are not necessary if the tTG is positive. 

[GottaSki]

Sure, for monitoring if in fact she has Celiac (pretty likely) it would definitely be good. However, I just meant for purpose of diagnosis they are not necessary if the tTG is positive. 

 

Since the doctor already recommended removing gluten, I thought it wise to get the additional tests now to prevent the frustration that can happen if her biopsies do not provide clear data for this doctor to diagnose Celiac Disease.

 

In fact I tell everyone to get as much starting data as possible...there is simply no way to know who is going to end up in diagnostic limbo after removing gluten.

 

Hang in there Mom & J

[Gemini]

Sure, for monitoring if in fact she has Celiac (pretty likely) it would definitely be good. However, I just meant for purpose of diagnosis they are not necessary if the tTG is positive. 

Actually, it is really important, as GottaSki mentioned, to have the complete Celiac panel done. tTg can be elevated with Hashi's alone.  Ttg is not useful for dietary compliance if diagnosed with Celiac....the DGP is.  It would be really worthwhile to have original numbers before a gluten-free diet is started.

 

mom2J......I would bet a week's pay your daughter has Celiac.  I thought it odd that a doctor would give "permission" for you to start a gluten-free diet.  No one needs permission to start a diet that could be lifesaving.  Between her symptoms, which are definitely NOT "non-specific" and her difficulty in gaining weight, she sounds like a Celiac to me.  I never had the cramping and diarrhea until the week I was diagnosed and I was 46 years old when that happened.  I most likely triggered for Celiac as a toddler, when I look back at symptoms and some tooth problems I had that would have had to have happened when my teeth were forming.......very, very young.  Many people do not experience the diarrhea yet doctors get hung up on that.

 

A few things......low WBC is common for those with autoimmune disease.  Mine have been low my entire adult life and I have Celiac, Hashi's, Reynaud's and Sjogren's Syndrome.  They are a little higher lately but I have been strictly gluten-free for 9 years now.  The only time it is cause for worry is if your daughter is getting sick all the time.

But you need to wait until she is gluten-free for awhile because just having undiagnosed Celiac can make you sick all the time.

 

You will have to watch for signs of hyper-thyroid once she is on the gluten-free diet for a bit.  Once your gut starts to heal and absorb nutrients again, the thyroid dose she is taking now may end up being too much.  That happened to me and I went seriously hyper after being gluten-free for 4 years. Remember, I was a lot older at diagnosis so it took longer for me to heal than it will most likely take for a 12 year old.  I have lowered my dose of thyroid meds by 20 mcg....which doesn't sound like much but it is.  I was diagnosed with Hashi's 20 years before the Celiac.

 

It may take a bit longer for her tTg-Iga to come down to normal because both Celiac and Hashi's will raise it.  Don't become alarmed as this is quite normal.

 

You do know that if it is Celiac, then the whole family needs to be tested!  Good luck and don't worry.......the answers to her health issues are being discovered.  The gluten-free diet is not hard, once mastered, and there are many options available now that were not there just 10 years ago.  She will be fine! 

[mom2J]

Thanks again to all of you who have replied.  All very good information to be aware of. 

 

As far as why the Dr. gave permission to go gluten free, was because previously they asked us to keep her on her normal, gluten containing diet so as to not affect the test/biopsy results.  It was the day of the biopsy he said we could do gluten free now. And yes, he also did inform us that we all need screening for celiacs if she is positive for it. 

[GottaSki]

 

As far as why the Dr. gave permission to go gluten free, was because previously they asked us to keep her on her normal, gluten containing diet so as to not affect the test/biopsy results.  It was the day of the biopsy he said we could do gluten free now. 

 

This is good advice - if he had run a complete antibody panel.  Sounds like he is following protocol with the exception of the additional blood work. 

[Gemini]

I think once your daughter goes gluten free, things will improve dramatically.  She also has Hashi's, which is one of the most common associated conditions with Celiac.

You are lucky that this was caught so young!  Many of us were deathly ill from going so long without a diagnosis and I wouldn't wish that on anyone.  If there are any foods that your daughter misses, let us know because there are many substitutes out there that are just as good.  No need to feel deprived on a gluten free diet!

 

Good luck!

[GottaSki]

 If there are any foods that your daughter misses, let us know because there are many substitutes out there that are just as good.  No need to feel deprived on a gluten free diet!

 

Good luck!

 

Yep, this.

 

Two of my kids were teens when they removed gluten -- anything can be replicated.  

 

Hardest part for all of us is the lack of spontaneity, but once the transition is made it becomes much easier to deal with all circumstances - for young people as well as those of us older folks ; )

[mom2J]

Hi all!

 

So her pediatric GI called with the biopsy results.  They confirm Celiac disease. The pathology report said it was graded Marsh 3b.  Poor girl.  Well now we know why she has been feeling so awful and have an answer. She also had gastric inflammation, but no presence of H. pylori or other microbes.  So he is prescribing some meds for that.  Anyone else have this in addition to Celiac at diagnosis?

 

Another question…has anyone else had or has their child had anxiety associated with celiacs that improved after going gluten free?  She has a lot of anxiety and is severe enough to require visits with a psychologist.  This started about a year ago, about the same time all her other symptoms started.  

 

Thanks again!

[cyclinglady]

Yes, anxiety goes hand in hand with celiac disease. I thought I was going crazy and blamed it on menopause, but it was really the celiac disease. The anxiety went once I healed up!

I am glad you know where you stand and that your daughter feels better soon.

[GottaSki]

Hi all!

 

So her pediatric GI called with the biopsy results.  They confirm Celiac disease. The pathology report said it was graded Marsh 3b.  Poor girl.  Well now we know why she has been feeling so awful and have an answer. She also had gastric inflammation, but no presence of H. pylori or other microbes.  So he is prescribing some meds for that.  Anyone else have this in addition to Celiac at diagnosis?

 

Another question…has anyone else had or has their child had anxiety associated with celiacs that improved after going gluten free?  She has a lot of anxiety and is severe enough to require visits with a psychologist.  This started about a year ago, about the same time all her other symptoms started.  

 

Thanks again!

 

Anxiety is a fairly common symptom of Celiac Disease.  My now 20 year old son with celiac disease had mild anxiety as a child that worsened in his teens.  He removed gluten at 15 - it took a few years for his anxiety to subside, but it did improve.  Today he has no more than occasional situational anxiety.

 

As your daughter's time gluten-free increases she will likely have many symptoms improve....my first improvement was my nails and hair.  I had weak nails that would tear easily and although I had thick hair I was losing quite a bit each day.  This wouldn't effect her, but I also stopped going gray

 

Each of my children had many different symptoms that all improved or completely disappeared within the first months gluten-free.

 

I think others may have mentioned this...you, Dad and any siblings need to be tested for Celiac Disease.

[StephanieL]

Hugs. Glad you have some answers though. Get everyone tested for sure before making big changes in the house. Different families deal with it differently so decide what works best for yours.

[mommida]

A vitamin B12 deficiency symptom is anxiety.  It is very likely to be B12 deficient with Marsh 3 results.  There is no toxic level of B12 for humans and sublingual supplements are available.

 

Glad you have the diagnoses and can start healing on the gluten free diet.

 

I suggest a safe snack bag be carried around for a while.  (even if it's not the healthiest of choices in the bag like chips and candy bar along with fresh veggies and snack bars)  It really sucks to be out and about and hungry seeing others around you eating and you have nothing to eat possibly because you didn't know it was safe.

[sewerplant]

Well this is certainly good news, if finding out you have celiac can be considered "good news".  My daughter at the age of 14 was also diagnosed via blood work and endoscopy to have celiac disease and she too suffered miserably, had terrible, terrible anxiety attacks and insomnia.  She too was sent to and was seeing a psychologist prior to her diagnosis.  Let me tell you, the anxiety/panic attacks do go away.  It all takes time though . .. I was so impatient and expected her to feel better immediately, at least within a few weeks (as others had told me they did).  However it took much more than a few weeks, but the time did go by and she has healed. And aside from a heat intolerance that never did go away, she is 16 now and doing very well; as I hope your daughter will soon be feeling!

[mom2J]

Well this is certainly good news, if finding out you have celiac can be considered "good news".  My daughter at the age of 14 was also diagnosed via blood work and endoscopy to have celiac disease and she too suffered miserably, had terrible, terrible anxiety attacks and insomnia.  She too was sent to and was seeing a psychologist prior to her diagnosis.  Let me tell you, the anxiety/panic attacks do go away.  It all takes time though . .. I was so impatient and expected her to feel better immediately, at least within a few weeks (as others had told me they did).  However it took much more than a few weeks, but the time did go by and she has healed. And aside from a heat intolerance that never did go away, she is 16 now and doing very well; as I hope your daughter will soon be feeling!

This is good to hear, and thank you for warning me about the possibility of it not being immediate.   It is so interesting that you mention the heat intolerance.  My daughter has that as well.  She has been intolerant to heat for as long as I can remember actually.  I wonder if that is somehow related. 

[1desperateladysaved]

Glad to hear you got a definitive diagnosis.  Now the healing can begin.  I wish your daughter a healthy life in all aspects.

 

Dee

[124chicksinger]

Awww, I'm so glad you finally have an answer for your daughter and her healing can begin in earnest.  Hugs.

[Cara in Boston]

Glad you have some answers and can now focus on getting her healthy.  Anxiety was one of my major symptoms.  I thought it was just caused by me having such weird/scary symptoms and the doctors never found anything wrong . . . I began to think I was going crazy.  It definitely went away after being gluten free, however it was more gradual than immediate.  Other symptoms I had went away within days.

 

Be aware that a person can experience gluten withdrawal . . . and feel worse in the first couple of weeks being gluten free.  It passes quickly and then it is all about feeling a little better each and every day.  

 

Best of luck to you.

[mom2J]

So today we met with a nutritionist that works in the Pediatric GI clinic where my daughter is being treated.  That was a very informative and a helpful resource.  We both came home with a thick Celiac disease and gluten free diet booklet.  They also sent her home with a huge bag of Pediasure samples due to her being extremely low weight for her height.  Also, I was able to obtain a copy of the pathology report, and I had thought the Dr. had said she was a Marsh 3b, but I must of misunderstood because the pathology report says 3C.  Does that mean complete villous atrophy? I also thought it was interesting that they measured her digestive enzymes in her tissue samples.  I didn't know they did that.  She was severely deficient in all but one of those.