Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Biopsy results

Lindsey1978

Recommended Posts

Lindsey1978 Apprentice
Lindsey1978
Posted

Hi everyone. looking for some more advice.  My 9 yr old has been sick for about 8 weeks now with various symptoms but not enough for the Drs to pinpoint anything. He's had 2 "low" positive coeliac screens and just had a scope on Friday. The Drs seem to be very reluctant to diagnose with anything, just saying it's a bug (he did pick one up in the middle of all this but multiple tests show this is not the cause of all his symptoms), its psychological and sometimes kids are just sick. I took him to a nutritionist who has said coeliac or not she would advise gluten free and lactose free based on his history and test results. I'm happy to do this because it can't hurt and so far the Drs are kind of if we can't diagnose anything there's nothing wrong and just deal with it. Dr rang today with biopsy results which show minor abnormalities but still not clear on what it is and won't diagnose but said to keep eating gluten and will recheck bloods and possibly do a second biopsy in 6-12 months. I just don't understand why it's so hard. If they really don't think it's coeliac that's ok, but why the insistence of staying on gluten. They did do bloods again but he hadn't got those results yet. If they're ruling out coeliac but not looking at anything else but telling us to keep eating gluten why? Sorry I am just so confused and upset and had a plan to get my little boy off gluten and hopefully feeling better whatever the biopsy said and now I don't know what to do. He has shown some improvement but still sick and out of sorts. It seems that at the moment he is breaking down. A nose infection and inflamed ear is the latest after hives, mouth ulcers and vomiting with severe stomach pain for the last 8 weeks. Not to mention being tired and lethargic and complaining of joint pain. And his eczema is making s comeback. What would you do?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Feeneyja Collaborator
Feeneyja
Posted

It's a personal choice (obviously).

i have a daughter who did not test positive on her gluten challenge. We were told to continue eating gluten. I took her off of it. She did so well before the challenge when gluten free that to make her sick for testing was just heartbreaking.  And her symptoms are primarily neurological.  When I told her GI that she gets neuropathy, loss of use of limbs (she can't walk), balance issues, and tremors when accidentally glutened , I was told she should go back on gluten again for 12 weeks for celiac testing again.

We declined. 

I think the doctors are looking for "official" indication that it is celiac prior to going gluten free because accurate test results once gluten free are nearly impossible.  But it can brew for a long time before you get the all out "official" damage.  The question is, is that official diagnosis worth it?  

I'm sorry you are going through this.  I know how difficult it is.  

TexasJen Collaborator
TexasJen
Posted

I am wondering what tests they ran.  Can you get all of the lab results and the path reports?  If so, publish them here.  OR, take them and get a second opinion from a pediatric GI doc.  Celiac diagnosis in kids is a little different than in adults. 

Maybe they only did an TTG in which case a full celiac panel might be illuminating. Also, if there is positive blood work and even mildly positive biopsy (mild villous blunting), it's hard not to try a gluten free diet for a while and see how he does.

If they aren't going to retest for 6-12 months, another option is to go gluten free for 3 months and then do a gluten challenge for 3 months and look at the differences in his symptoms.

I agree with you that seeing our kids suffer is the worst!  

Good luck

  • 3 months later...
desirun Explorer
desirun
Posted
On June 21, 2017 at 7:51 AM, Feeneyja said:

 

On June 21, 2017 at 7:51 AM, Feeneyja said:

.  And her symptoms are primarily neurological.  When I told her GI that she gets neuropathy, loss of use of limbs (she can't walk), balance issues, and tremors when accidentally glutened , I was told she should go back on gluten again for 12 weeks for celiac testing again.

 

Feeneyja-How old is your daughter? Mine is 13 and experienced almost the same symptoms. She was diagnosed with probable celiac 5 1/2 weeks ago. Her symptoms have been improving off of gluten. Our GI recommended we see a neurologist due to atypical symptoms. This is the first time I've come across a child with a similar presentation.  

desirun Explorer
desirun
Posted
On June 21, 2017 at 7:05 AM, Lindsey1978 said:

Hi everyone. looking for some more advice.  My 9 yr old has been sick for about 8 weeks now with various symptoms but not enough for the Drs to pinpoint anything. He's had 2 "low" positive coeliac screens and just had a scope on Friday. The Drs seem to be very reluctant to diagnose with anything, just saying it's a bug (he did pick one up in the middle of all this but multiple tests show this is not the cause of all his symptoms), its psychological and sometimes kids are just sick. I took him to a nutritionist who has said coeliac or not she would advise gluten free and lactose free based on his history and test results. I'm happy to do this because it can't hurt and so far the Drs are kind of if we can't diagnose anything there's nothing wrong and just deal with it. Dr rang today with biopsy results which show minor abnormalities but still not clear on what it is and won't diagnose but said to keep eating gluten and will recheck bloods and possibly do a second biopsy in 6-12 months. I just don't understand why it's so hard. If they really don't think it's coeliac that's ok, but why the insistence of staying on gluten. They did do bloods again but he hadn't got those results yet. If they're ruling out coeliac but not looking at anything else but telling us to keep eating gluten why? Sorry I am just so confused and upset and had a plan to get my little boy off gluten and hopefully feeling better whatever the biopsy said and now I don't know what to do. He has shown some improvement but still sick and out of sorts. It seems that at the moment he is breaking down. A nose infection and inflamed ear is the latest after hives, mouth ulcers and vomiting with severe stomach pain for the last 8 weeks. Not to mention being tired and lethargic and complaining of joint pain. And his eczema is making s comeback. What would you do?

If it were my child, I'd keep him off of gluten and dairy as recommended by the dietician, especially since he's not well and this is possibly celiac.  It won't hurt him to be off of gluten and he may even improve, but if this is celiac disease or gluten intolerance, he will not improve on the gluten.  Right now your goal is for him to be well as soon as possible. I personally would wait until your son is healthy and recovered to even consider reintroducing gluten for a challenge.

There is nothing worse then not having clear answers. I would encourage you to be persistent. Eight weeks is not typical for a "bug." Follow your gut, if you are getting the cold shoulder see another doctor/doctors.  Get and keep copies of all test results as part of your son's history to help new consults avoid retesting and to help determine the next steps in his care.

Have you seen an allergist...?

 

Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

Thanks desirun. I have takenhim off gluten and he has improved out of sight. Only times he hasbeen sick since was when he ate something with gluten. His 14 yr old brother has just been diagnosed with type 1 diabetes and now coeliac screen has come back positive for him as well. Ttg was 745. normal is anything under 20. 

Waiting on gene test for him before scheduling biopsy. Makes it more likely that my younger son does have coeliac now I think. Will also be getting my daughter tested asap. 

ravenwoodglass Mentor
ravenwoodglass
Posted
4 hours ago, Lindsey1978 said:

 

Waiting on gene test for him before scheduling biopsy. Makes it more likely that my younger son does have coeliac now I think. Will also be getting my daughter tested asap. 

With his bloods coming back that high there is no chance he is not celiac.  The gene test is not diagnostic. There are rare cases of celiacs that don't have one of the two most common genes.  You may want to go ahead and get the biopsy done if you are choosing to do one. Some doctors will diagnose based on relief of symptoms and decrease in antibodies after the diet has been strictly followed.  Do keep in mind that intestinal damage can be patchy and be missed. He will need the diet even if the biopsy is negative.  Do keep him on gluten until the biopsy is done then take him gluten free. You don't have to wait on the results. Good to hear that you are planning on testing your daughter and don't forget testing on yourself and their father if it hasn't already been done.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......

ravenwoodglass Mentor
ravenwoodglass
Posted
50 minutes ago, Lindsey1978 said:

His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......

Has he had any of the other celiac blood screening tests?  While another AI disease can cause a false positive those false positives are not that high. I am so sorry he is having to deal with both but the gluten free diet may help him keep his diabetes under better control.

Jmg Mentor
Jmg
Posted
51 minutes ago, Lindsey1978 said:

His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......

 

It is tough news and it's certainly not fair. 

Just maybe there may be some positive news coming for him however if he reacts well to the gluten-free diet. It could be he has improvements in his diabetes for instance.  

The diet is a pain in the xxxx but it does get easier over time and the choice of safe foods continues to expand. 

Wishing you and him the best of luck...

Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

He had the dpg igg as well. That came back at 50, normal is under 20.   It's the waiting that is hard and the reluctance of Drs to diagnose. His diabetes educator has already said they won't pay attention to those results for 3 months and then they'll test again. If they're still high they will look at the next steps. Gp seems a bit more ready to proceed now so hopefully he will get the referral sorted so we can have a definite answer before too long. 

Jmg Mentor
Jmg
Posted

I can understand doctors being cautious and wanting certainty before diagnosing a youngster with a lifelong condition that will limit their already limited dietary choices. Even so, his figures seem to make a very strong case and I wonder what their rationale is for waiting 3 months? That seems to be time that could be better spent getting him healthier on a gluten-free diet. I wonder if you can ask them what clinical advantages the delay will bring? Either it could speed the process along, or at least you'd get a better understanding of why they advocate a delay? 

ravenwoodglass Mentor
ravenwoodglass
Posted
50 minutes ago, Jmg said:

I can understand doctors being cautious and wanting certainty before diagnosing a youngster with a lifelong condition that will limit their already limited dietary choices. Even so, his figures seem to make a very strong case and I wonder what their rationale is for waiting 3 months? That seems to be time that could be better spent getting him healthier on a gluten-free diet. I wonder if you can ask them what clinical advantages the delay will bring? Either it could speed the process along, or at least you'd get a better understanding of why they advocate a delay? 

His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded.  Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months.  Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.

Victoria1234 Experienced
Victoria1234
Posted
On 6/21/2017 at 8:05 AM, Lindsey1978 said:

My 9 yr old has been sick for about 8 weeks now with various symptoms

That doctor is delaying unnecessarily! If he's been sick for 2 months already, another 3 months is cruel and unusual.

Lindsey1978 Apprentice
Lindsey1978
Posted
  • Author

So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway?

Why is this disease so confusing for the medical world? 

Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi. 

It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it. 

Makes me so infuriated I just laugh about how I already seem to know more. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.