Help with my daughter pls

[MelissaNZ]

Hi wondering if someone could help. my daughter has mildly raised TTG  levels and the gliadine levels, she has one Coeliacs gene, but her biopsy came back negative.   We have kept her off gluten (and low dairy) for nearly a year to see if her symptoms improved.  They haven't.  But I don't know if they are related to gluten specifically.  Just wondering if anyone has other suggestions that may be going on with her.  Her symptoms are:

- Short stature, she's nearly 9 and my 6 year old boy is nearly bigger than her

- bumps on back of her arms

- urine leaking and occasional soiled pants, which could be from constipation she has at time's

- sticking out stomach

- dry patchy rashes on her face

- joint pain sporadically

- vomits every 6 weeks, but hasn't had gluten and seems to be no food connection

- reoccurring thrush

She had gluten last night at a party and was fine today.

I'm a bit lost and not sure where else to turn.  Thanks for any help.

[Ennis-TX]

I would say get retested, to be sure, do a gluten challenge with her where she eats gluten for 12 weeks, not much just a half slice of bread a day or a wheat cracker for the blood test and 2 weeks for the biopsy. You mentioned bumps, and dry patches...this might be DH from celiacs and if it is you can go to a dermatologist and they can test it. In some people with DH reactions to gluten, their intestines do not show much damage as most of the antibodies are directed elsewhere. In this case you would have your symptoms.

Now Celiac is a autoimmune disease that commonly has other auto immune diseases associated with it. NOW if your daughter has the gene for it she could have another automimmune disease I am not very familiar with and someone else might be able to help you more on suggestions for testing.

Now in my personal opinion it sounds like she was still getting into gluten when you said she was off of it. NOTE gluten is a tricky bugger, it is a protein smaller then a germ that can stick in cracks and scratches on all your utensils, food prep area, knifes, etc. As a flour it can hang in the air for hours and even be inhaled effecting some of us. It is present in a lot of things we do not consider, like makeup, playdough, shampoos, seasonings, sauces, even some dry wall spackles.  Now if she is in a shared house hold with other kids and not everyone is on this diet she has likely been getting into gluten somewhere, like touching glutened surfaces the other kids touched after eating gluten foods then putting her hand in her mouth or on safe foods. Or just randomly eating gluten foods, note symptoms can last weeks and wane from how it is effecting you.

It does not take much to trigger symptoms you might have to be more careful and move her to a whole foods only diet, and have a separate prep area, utensils, cooking zone for her if you wish to keep fixing separate meals for her vs the gluten family.     I would suggest just changing the entire family over, anyway perhaps start with a separate fold out table, use freezer paper to line the prep area, a microwave, mini toaster oven, and some microwave cook ware like steamers, steam bags, etc. and using gloves to fix her meals. She will need her own condiment jars (crumbs in hte jars) and area for safe snacks. I would suggest getting her only gluten-free CERTIFIED FOODS for now. You can find some whole food healthy snacks at mygerbs.com, and a few other places. I will provide a link to gluten-free food list. PERHAPS you can change the entire family over....now days it is more like changing brands as everything you used to eat is available in a gluten-free brand. ALSO have a lot of dairy free options there.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

[cyclinglady]

I agree with Ennis.  It sounds like she is getting access to gluten way too often to expect healing.   I had some pretty severe patches of intestinal damage when I was diagnosed.  Anemia was my symptom and I had no gut issues then.  So, just because she injests gluten and does not have some major symptoms right away, does not mean she is not building up antibodies.  Have those antibodies been re-tested to see if they are in the normal ranges now?  Missing patches of damage in the small intestine is possible.  Heck, the small intestine is the size of a tennis court (goggle it).  So easy to miss.  Also, your GI should have taken more than four samples?  How many were taken? (Forgive me, if I have forgotten.)

Cross contamination in your house is real, especially if you have kids in the house.  Member Jebby, a preemie doctor who has celiac disease, was not getting well.  Turns out her four small and adorable children were glutening her.  She made her house gluten free.  Just something to consider.  

You mentioned she had access to gluten at a party.  So, does that mean she caves in and eats it?  She needs to become a stakeholder in this diet.  

[MelissaNZ]

6 hours ago, Ennis_TX said:

I would say get retested, to be sure, do a gluten challenge with her where she eats gluten for 12 weeks, not much just a half slice of bread a day or a wheat cracker for the blood test and 2 weeks for the biopsy. You mentioned bumps, and dry patches...this might be DH from celiacs and if it is you can go to a dermatologist and they can test it. In some people with DH reactions to gluten, their intestines do not show much damage as most of the antibodies are directed elsewhere. In this case you would have your symptoms.

Now Celiac is a autoimmune disease that commonly has other auto immune diseases associated with it. NOW if your daughter has the gene for it she could have another automimmune disease I am not very familiar with and someone else might be able to help you more on suggestions for testing.

Now in my personal opinion it sounds like she was still getting into gluten when you said she was off of it. NOTE gluten is a tricky bugger, it is a protein smaller then a germ that can stick in cracks and scratches on all your utensils, food prep area, knifes, etc. As a flour it can hang in the air for hours and even be inhaled effecting some of us. It is present in a lot of things we do not consider, like makeup, playdough, shampoos, seasonings, sauces, even some dry wall spackles.  Now if she is in a shared house hold with other kids and not everyone is on this diet she has likely been getting into gluten somewhere, like touching glutened surfaces the other kids touched after eating gluten foods then putting her hand in her mouth or on safe foods. Or just randomly eating gluten foods, note symptoms can last weeks and wane from how it is effecting you.

It does not take much to trigger symptoms you might have to be more careful and move her to a whole foods only diet, and have a separate prep area, utensils, cooking zone for her if you wish to keep fixing separate meals for her vs the gluten family.     I would suggest just changing the entire family over, anyway perhaps start with a separate fold out table, use freezer paper to line the prep area, a microwave, mini toaster oven, and some microwave cook ware like steamers, steam bags, etc. and using gloves to fix her meals. She will need her own condiment jars (crumbs in hte jars) and area for safe snacks. I would suggest getting her only gluten-free CERTIFIED FOODS for now. You can find some whole food healthy snacks at mygerbs.com, and a few other places. I will provide a link to gluten-free food list. PERHAPS you can change the entire family over....now days it is more like changing brands as everything you used to eat is available in a gluten-free brand. ALSO have a lot of dairy free options there.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

Thank you for your informative reply.  Yes I think you are right in that she is still getting dome cross contamination exposure through chopping boards, condiments etc.  I will get her bloods redone to see if her levels have dropped and do a gluten challenge again.  We all are on a whole foods diet, buy not all Gluten-Free.  

 

I find extended family difficult as because she had a negative biopsy they don't believe she could still possibly have it and aren't so careful with her.

 

Thank you for the links, all very helpful.

[MelissaNZ]

4 hours ago, cyclinglady said:

I agree with Ennis.  It sounds like she is getting access to gluten way too often to expect healing.   I had some pretty severe patches of intestinal damage when I was diagnosed.  Anemia was my symptom and I had no gut issues then.  So, just because she injests gluten and does not have some major symptoms right away, does not mean she is not building up antibodies.  Have those antibodies been re-tested to see if they are in the normal ranges now?  Missing patches of damage in the small intestine is possible.  Heck, the small intestine is the size of a tennis court (goggle it).  So easy to miss.  Also, your GI should have taken more than four samples?  How many were taken? (Forgive me, if I have forgotten.)

Cross contamination in your house is real, especially if you have kids in the house.  Member Jebby, a preemie doctor who has celiac disease, was not getting well.  Turns out her four small and adorable children were glutening her.  She made her house gluten free.  Just something to consider.  

You mentioned she had access to gluten at a party.  So, does that mean she caves in and eats it?  She needs to become a stakeholder in this diet.  

Thanks for your reply.  I will get her retested.  She hasn't had any gluten for a year and is very good at not eating it, but had some cake that night.  It's so hard because the Dr who did the biopsy said there wasn't any damage so she can't be classed as Coeliacs.  She had ten samples taken, but yes, like you say the intestines are huge.

[Ennis-TX]

As mentioned before you said she had rashes, have they checked if that is DH? That is a positive sign of celiac and those with the DH manifestation can have problems getting a postive with the gut biopsy.   Here are some links.

Open Original Shared Link

Open Original Shared Link

Please read up on this. She can get the rash tested for the disease if it is DH.

[knitty kitty]

MelissaNZ, 

Has your daughter been checked for vitamin deficiencies???

Vitamin D deficiency symptoms include urinary incontinence, oral candidiasis (thrush), skin rashes, bumps on the backs of arms, joint pain, distended stomach and short stature.  Bones can't grow much without vitamin D.  Vitamin D deficiency causes delayed gastric emptying (food doesn't move through the gastrointestinal tract at a normal speed and the intestines bloat) which explains your daughter's delayed reaction to the cake.  

Vitamin A deficiency is also a cause of bumps on the back of the arms. Vitamin A deficiency causes vision problems. Vitamin A and D are both fat soluble vitamins.  Absorption of fats is a problem for Celiacs.  So is absorption of B vitamins and important minerals. B Complex vitamins are water soluble and must be replenished every day. Skin rashes are associated with several B vitamins like niacin (B3), B12, and thiamine (B1).  

I went through a period of severe malnutrition prior to diagnosis.  It was not a pleasant experience.  I had symptoms similar to your daughter's, including the incontinence, which resolved on vitamin D supplementation.  

Please, please have your daughter tested for vitamin D deficiency.  And have her B vitamins checked as well.  Celiac Disease causes malabsorption.  Malabsorption causes deficiency diseases.  Newly diagnosed Celiacs need to be checked for deficiencies.  

I hope this helps.

 

[MelissaNZ]

Thanks for that.  Will get her tested for deficiencies.  I did take her to a naturopath and get her on a bunch of vitamins, but she never was tested via bloods, so will get on to that, thanks

 

[ravenwoodglass]

34 minutes ago, MelissaNZ said:

Thanks for that.  Will get her tested for deficiencies.  I did take her to a naturopath and get her on a bunch of vitamins, but she never was tested via bloods, so will get on to that, thanks

 

Make sure that you ask the doctor how long she has to stop the supplements before you have her levels tested and be sure to take them all with you when you have the appointment so the doctor knows what she is taking.