desirun

My daughter is now in high school and there isn't a 504 plan option anymore, so she is on a health plan.  I'm not sure if the plans vary from state to state, but in IL 504 plans are still an option for elementary.  My guess is your school isn't familiar with celiac decease and the need for a 504 plan.  Ask for a note from the MD's office and continue to advocate for your daughter.  This will also help pave the way for other kids with celiac disease at your school.

My daughter is 13. She was diagnosed last August. She also had horrible neurological symptoms. We went to a highly recommended and regarded GI doc who was stumped by her neuro symptoms and didn’t believe they were celiac related. We finally took her to the best Celiac GI specialist in our area who understood that her systems were related to gluten and celiac disease. Don’t feel crazy, maybe it’s time to switch doctors.

As for the cross contaminations, I would start packing all your own food. It sucks, there’s no other way to put it and life changes, but it does get easier and better. 

Hang in there and give yourself grace!

My daughter dropped from TTG's of 50 to 18 in two months gluten-free. Keep up the good work!

To clarify, did the endoscopy come back completely clear? Maybe the results are being misread?  Do you have a copy of the report? I speak from experience that even GI’s can miss Celiac Disease on an endoscopy report. 

I’m worried 4 weeks on gluten  would be torture and too harmful to your healing body. If your wheat antibodies were high and you responded well to being gluten free ,and now are extremely symptomatic back on gluten, it seems your answer is clear. 

Agree with above- retesting her TTG antibody levels should shed some light on the situation. 

2 minutes ago, kareng said:

You might find out you both are.  

 

why not just do the regular gene test?  Then you know they test the correct things.  And if our doctor orders it, you might get your insurance to pay for it

True, we could both be!  TTG testing approved, genetics are not in our case.  

Soccer tournament went great. Thanks for your tips and support. Excellent suggestions that helped.

Has anyone done this genetic test yet?  My daughter has Celiac, and hoping this is an accurate/less expensive way to determine if my husband or I are the gene carriers for the rest of our family.  Any thoughts/knowledge on results vs. traditional blood genetic testing?

Are decorative cookie sprinkles with gluten-free ingredients but made in a facility that manufactures wheat considered safe? So many gluten-free products are also produced in a factory with wheat but test less than 20 PPM...so unsure on this one.  If they are not safe, what brands are go tos?

great post.

I need help, my 13 y.o. daughter is 9 weeks post diagnosis, still feeling icky, but wants to travel and play in her 3 1/2 hour away soccer tournament this weekend in Indianapolis..ugh. We'll hit the road Friday and head back Sunday afternoon. Our hotel will have a microwave and small fridge. The team has planned a meal out at Buffalo Wild Wings and other buffet type dinner/lunches. My daughter won't be able to eat from any of these places. 

I'm stressed about what food to pack and prepare.  Should we bring gluten-free food to the restaurant/buffet meals so my daughter can sit with her team? Should I buy a cheap toaster oven to make food in? 

New to the travel aspect! Thank you for any tips! Stressed...

Ditto above. Run for the hills. Find a new doctor. There is nothing more toxic than a physician treating an illness he/she is not versed in and/or making up an unfounded treatment plan!  Good job following your gut, something IS way off!

Agree with Cycling Lady. My friend's daughter with Celiac is chronically constipated and takes Miralax daily. My daughter was diagnosed 9 weeks ago. She initially had diarrhea 5-6 times a day. Now that she is gluten free, she has 1-3 formed BM's a day. 

One thing I've really learned is the symptoms vary so very much from person to person.  

Celiac.

Hi Phoebe-

We're paddling up stream in the same boat.  I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago.  She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating.  The evenings are the worst!  I call it the celiac witching hour.  After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks.  I know how you feel, exhausted, discouraged, and terrified that trace gluten is contaminating your girl.

Over this past week and a half I feel we are turning a corner. Here is what has helped: 

1. Our GI rechecked her TTG's, they are coming down nicely, so I know she is not getting trace gluten.  Depending on your daughter's case, your GI may do the same. It was helpful to decrease my anxiety and rule that out.

2. Our GI took her off dairy a few weeks ago, I KNOW it's an awful thought and exhausting to contend with removing more from the diet, but it's not so bad. The good news is you will know quickly, in about a week if dairy is making a difference after removing it.  The problem is lactose in milk products. When healing from celiac, compromised intestines often don't successfully communicate with our other organs to emit digestive enzymes (including lactase, the enzyme needed to digest lactose in milk based products). Also, you can simply give your girl a lactase chewable enzyme for kids with a dairy containing meal is she really loves a certain foods that you'd rather not take away right now. Fairway Milk is lactose free, it's ultra filtered, so very high in protein, low sugar, and delicious (my kids like it better than regular milk). Truly, I found dairy is relatively easy to substitute. I will say however, taking our daughter off of dairy for two weeks did not make a difference, but maybe something that will help your situation.

3. When my daughter wasn't eating a substantial meal, she would still take her multivitamins. These can be tough on the stomach lining and cause stomach upset and nausea. I started to make sure she had a good meal before taking her MVI.

4. We were given the thumbs up on probiotics. My daughter took children's culturelle daily for a few months: prior to and after diagnosis. I pulled it 2 weeks ago just thinking maybe it's too much right now for her system. Maybe something to consider.

5. My daughter improved consistently (much less abdominal pain, formed BM's, and began eating much better) after adding childrens digestive enzymes with each meal. What I mentioned in #2, the lack of digestive enzymes with celiac disease, may include other enzymes in addition to lactase. Maybe it was timing, that she was naturally turning a bit of a corner, but it also coincided with starting "Tummy Zyme" kids digestive enzymes by Animal Parade. I read about the lack of digestive enzymes in the book "Celiac Disease-a Hidden Epidemic." I then researched kids digestive enzymes and these were rated well.

6. I found by talking to my daughter she could pinpoint what didn't upset her stomach, foods that she seemed to always tolerate well. Maybe due to simple ingredients, or maybe psychological, she could always tolerate skinny pop (popcorn, salt, and sunflower oil) and Milagro corn tortilla chips w/ Goodfoods chunky guacamole.  I add extras in her school bag, in the car, and on the go for snacks. I'd let her choose these over other healthy snacks or foods I had in mind if it meant calories and her actually eating. Maybe there are foods your daughter can pinpoint helping?

I recently talked to a few celiac disease moms and they said it took up to 3 months for their child to feel better and eat well consistently. I've also heard it's not uncommon for your child to have good/better days and then bad days during the healing process. 

I hope you're daughter begins to feel better soon and is able to take in more calories!

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...?

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.  

Thanks Celiac's Wifey, your response makes sense. Perhaps the gastroenterologist's insistence that she could only truly diagnose my daughter with an positive endoscopy really has me questioning things.  My daughter was almost symptom free as of yesterday since we eliminated gluten on Friday, I guess that should be my answer, but yet could it be something else? We initially wavered on completing the endoscopy, feeling we had enough information to believe she has celiac, but the GI insisted and we also read a positive biopsy increases gluten-free compliance.  Well, I guess we just have to use our best judgement and the knowledge we have...thank you for the encouragement.

I've just been informed my daughter has "probable Celiac" by our gastroenterologist.  I'm frustrated that we don't have a firm diagnosis. My daughter was sick with a virus or food poisoning a month ago, and since then has had intermittent diarrhea, abdominal cramps, headaches, peripheral neuropathy, and leg weakness. Her vitamin levels, CBC, chemistries, and inflammatory markers were all normal. Her two IGA totals were 238, then 233, normal range is 58-358. Her first TTG IGA was 46.3, second was 55.2, less than 15/normal. Her genetic cascade read "Permissive genes present, serology positive. Celiac disease probable. Biopsy may be appropriate." Her endoscopy was performed by a highly skilled GI at a very well respected Children's Hospital. 5 or 6 biopsies were taken. Her biopsies did not show the 3 disease characteristics. She only had mild-moderate increase in intestinal lymphocytes, but NO bilious blunting, and NO elongated glands. The GI says she has "probable Celiac." My daughter has been gluten-free since Friday and so far her symptoms seem to be resolving. Celiac seems likely, but it's not conclusive. I'm frustrated with the prospect of keeping her strictly gluten-free for life if we don't have a definitive diagnosis. I'm wondering if something else could have set off her system that will resolve over time? Also, we did see a neurologist as well who was not overly concerned with her symptoms. He felt she needed to be off of gluten to determine if another issue is factoring in. 

 

I am sorry that you are struggling with this possible diagnosis.  I have a 16 year old but she has tested negative so far even though she is symptom free.  Autoimmune diseases run rampant on both sides of  the family, so her risk is great.  

Celiac disease can be silent.  Symptoms can wax and wane.  The good news is that it is something that can be managed by a dietary change.  How lucky is that?  

Building strong bones is critical when hitting her teen years.  You have a chance to prevent so many issues outside of the GI tract that are impacted by celiac disease.  

Come back here for support for yourself and your daughter.  You are not alone!  We are here to help each other.  

Hugs! 

Thank you! And thank you for the air hug, I need it!

Ennis-TX-

Thank you! This is great information. It had to be horrible being so sick before your diagnosis. I just can't imagine.  I hope you are much better now.

I'm trying to figure out if I should suggest any other tests. So far she's had CBC, chemistries, thyroid, stool studies (c-diff, ova and parasites, and lactoferrin), sed rate, albumin, and CRP-all normal. Her IGA Quantitative was normal 238 (range 58-358). Her TTG IGA was high 46.3. We are going for HLA genetic typing today, partly because I am in denial, and also checking vitamin levels (Iron, Ferritin, TIBC, Vit. D, B12, Zinc, and Folate). Endoscopy is scheduled for next week Friday.

I can't wrap my head around the IgG and DGGL/Gliadin. From what I understand this gives more of a snapshot of chronic inflammation from celiac and length of disease and  perhaps not necessary if the TTG IGA is high, and the quantitative IGA normal?

Thank you!

Desiree

4 hours ago, Ennis_TX said:

 

4 hours ago, Ennis_TX said:

 

I could use some encouragement on accepting that my 12 year old daughter may have Celiac Disease.  She has been a very healthy, athletic girl up until 3 weeks ago, with the exception of occasional headaches (maybe 1-2 a week).  Three weeks ago, at the end of a long day, she suddenly became very ill with nausea, abdominal cramps, tremors, racing heart, diarrhea, and was both hot and cold and sweaty. She did't have a temperature,  and after several bouts of diarrhea, she went to bed. The next morning, she woke up, ate breakfast and felt fine until late in the day when her belly started to ache. Ever since that day she has had on and off numbness in her hands and feet, abdominal cramps, diarrhea, and the feeling of weakness in her legs and a shaky feeling (low blood sugar type feeling). We saw our Pediatrician and a GI specialist. All of her inflammatory markers, blood counts, white blood cells, and electrolytes came back normal. Stool panels so far are negative. Yesterday the GI MD called and told me her TTG is 46.3, normal is less than 15.  She is recommending an endoscopy to confirm Celiac and said the TTG is 90% accurate in diagnosing Celiac Disease. 

I feel like this is a false positive. My kid has only been sick for 3 weeks. The GI said there aren't false positives and the TTG is only specific to Celiac Disease. 

Has anyone else had a child with sudden onset?

Completely in denial........