Gluten Challenge Almost Unbearable

[AKSheridan]

I posted earlier this month about my 10 daughter who is absolutely miserable, and I believe it to be either celiac or a gluten intolerance. She was off gluten for about 3 weeks, and felt great. We were told to go back on it for at least 5 weeks for the testing. We have 1 week left and it's getting to the point where I can hardly stand it because of her behavior. I spent the morning in tears after sending her off to school because of her constant mood swings, and crying and screaming for no rational reason. She acts like she's possessed during these episodes and there's nothing you can say to make it better. She even knows it's not normal and told me she hates herself when she's like that but she can't help it. She's normally the sweetest, most mild mannered kid ever.

 

My question is, would going off gluten for just 3 weeks and then going back on, cause the symptoms to be more extreme than before? I've been letting her eat whatever she wants, but I'm thinking of restricting to one tiny serving of gluten a day just this last week to help her feel better. Yesterday she had FOUR pieces of french toast for breakfast, and a Jimmy John's sandwich for lunch. Breaded chicken breast for dinner. That's a lot of gluten. Last night was terrible, and she woke up extremely on edge this morning and flew off the handle shortly after waking. Through her tears she said she was so confused and didn't know why she was acting that way. It's heartbreaking. Luckily she seems to hold it together at school, but at home she's a loose cannon. Today I gave her eggs for breakfast, and a gluten free lunch and I'm praying for a better day! I'm literally counting the minutes until her labs next week!!

 

Advice/support would be greatly appreciated!!

Thank you ~ Amy

 

 

Here's her symptoms I listed from my previous post:

 

Symptoms:

- daily episodes of seeing colored shapes in her vision for a few minutes at a time (this is really the only thing that did not get better during the 3 weeks of being gluten free)

- wild mood swings/irrational anger/panic attacks...between meals and especially after ingesting sugar (hypoglycemic?)

- noticeable abdominal bloating, burping, flatulence and reflux

- loose stools containing globs of mucous

- occasional stomach pain couple times a week, but every few months it's quite extreme and causes her to scream and cry in agony, and turn pale and sweaty

- occasional unexplained vomiting, a couple times a year only

- dark under eye circles

- slight hand tremor

- tingly fingers

- multiple seasonal, enviromental and food allergies

- very tired and irritable

- Slowly falling on the growth curve. As a toddler she was 90th percentile for height, now she is at the 50th.

- A new one - she just chipped a tooth while eating a few days ago

[GottaSki]

Hi Amy!

 

She doesn't need to eat a lot of gluten.  One slice of glutenous bread per day for this last week of her challenge is sufficient.  I have suggested to others on challenge to eat a grilled cheese or cinnamon toast in the evening to help limit reactions during the work/school day...it has helped some, not all.

 

Her severe reaction to this challenge along with her history certainly indicates Celiac Disease.

 

Do make sure your doctor orders complete celiac antibody testing, not just a "screening".  She needs the following:

 

Total Serum IgA

tTG-IgA

tTG-IgG

EMA-IgA

DGP-IgA

DGP-IgG

 

Have you considered having an endoscopy regardless of her antibody test results?  I ask because it would be very difficult to go through another challenge down the road.  It can be helpful for patients/parents to understand all the steps of Celiac diagnosis....unfortunately, not all doctors do.

 

Hang in there

[AKSheridan]

Thanks Lisa! The order I have for the labs just says "celiac panel". Is this going to include everything you listed? The children's hospital will be doing the labs for us while she is in there for an MRI. The order was sent to me from her allergist.

[GottaSki]

A children's hospital panel should include them, but it is hard to say for sure.  Perhaps call the lab of the hospital and ask which tests are included in their "celiac panel"...just to make sure she is indeed getting them all.  I'd hate for her to have to go thru another challenge or even another blood draw if their panel is incomplete.

[NoGlutenCooties]

 

My question is, would going off gluten for just 3 weeks and then going back on, cause the symptoms to be more extreme than before?

 

 

Based on my own experience, I would say yes.  I had no symptoms prior to my diagnosis.  I only requested the blood tests because it runs in my family.  After being gluten-free for about 3 months I got glutened by a tiny bit of tabuli and had a fairly severe reaction.  No bad intestinal issues, but chills and cold sweats, bloating, extreme fatigue, and irritability.  So yes, I think the body reacts more severely after not having to deal with gluten for awhile.  And 3 weeks is long enough for the body to have started healing.

[AKSheridan]

Thank you for the replies. My daughter's labs came back negative. Unfortunately they did not run all the tests Lisa recommended above. Here's what was done:

 

IgA Anti Gliadin (Deamidated) = 1.5

IgG Anti Gliadin (Deamidated) = 1.3

IgA TTG = 1.7

 

Are these sufficient tests for me to be confident she is negative for Celiac?

 

Thanks!

[GottaSki]

Thank you for the replies. My daughter's labs came back negative. Unfortunately they did not run all the tests Lisa recommended above. Here's what was done:

 

IgA Anti Gliadin (Deamidated) = 1.5

IgG Anti Gliadin (Deamidated) = 1.3

IgA TTG = 1.7

 

Are these sufficient tests for me to be confident she is negative for Celiac?

 

Thanks!

 

Often the EMA is only run with a positive tTG-IgA, so I wouldn't worry about that one.

 

All three of these are negative...regardless of what the ranges were -- usually we ask for you to post ranges to as they vary between labs.  So it is a very good sampling....are you sure they didn't run a Total Serum IgA?  Without that test the results can be misleading -- although her DGP-IgG is negative too.  Tough call. 

 

If she is going to have and endoscopy I would ask for more blood work while she is still on gluten, I would include:

 

Total Serum IgA

tTG-IgG

and nutrient testing if she has not had any -- minimally B12, D, Iron and a CMP (Complete Metabolic Panel).

 

If you are not going to pursue more testing -- will the doctor diagnose Non-Celiac Gluten Sensitivity based on her strong reaction and return of symptoms when gluten was added back into her diet?

 

Hang in there

[AKSheridan]

Thanks Lisa! I will not be pursuing any more testing at this time. I would like to get to the bottom of things, but the poor thing has been through a lot the past few months with doctors and tests. She's had an MRI, overnight EEG, elimination diet, lab work, and has seen a neurologist, allergist, ophthalmologist, orthopedic surgeon.  She's starting to have some major anxiety, and I think it's from all the medical stuff. We're going to take a break from doctors for now, try to avoid gluten as best we can and see how she does. Oh, and she did have a ton of blood work that all came back good! Iron and CMP was part of it, but not vitamin D or B12. We're still waiting back on a few more labs, but everything looks good so far!

[GottaSki]

Sounds like a great plan...also good that her CMP and Iron showed no deficiencies.  It is possible that she has Celiac without much damage yet, which is a very good thing.  Even if she is NCGS you will likely see great improvement with complete removal of gluten.

 

Take care