Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Lindsey1978

Recommended Posts

Lindsey1978 Apprentice

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

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

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
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
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

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
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

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
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
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

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

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
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
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,406
    • Most Online (within 30 mins)
      7,748

    Ripken
    Newest Member
    Ripken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...