8 year old suffering with dizziness and back pain

[CatCann]

Hello,

  I really hope it’s ok to post. I’ll start at the beginning. My daughter suffered with stomach pains for years, so decided to take her off gluten and milk. It worked! A year after we slowly introduced gluten back into her diet and she seemed fine. Starting in July of this year every so often she complained of being dizzy, and her arms and legs felt shaky. 
this went on for a few months but didn’t think anything of it. 
for the last month she has had extreme dizziness that last all day and on and off lower back pain that can be bad. She wakes with it.

These symptoms seem to get worse at night. doctors have no idea what’s wrong, but I am starting to think could it be the gluten?? She had a celiac test done twice. First was a few years ago and came back negative, and recent one also came back negative. 
There is a part of me though that feels it could be the gluten. Has anyone else had these symptoms of shaky arms and legs, dizziness, lower back pains? And she has been breaking out in random rashes at random times. I am just so lost with it all now and really just want answers. If anyone could give me anything I would be extremely great full. 
 

Many thanks, 

catherine 

[Wheatwacked]

Welcome to the forum CatCann,

    Absolutely it's ok to post.

     The ultimate test of whether it is the gluten is that she improved without gluten and the doctors are stumped.

     All of her symptoms are common complaints seen here.

1. stomach pains for years
2.  off gluten and milk. It worked!  Could also be Non Celiac Gluten Sensitivity but when combined with her other symptoms Celiac Disease with negative serology seems more likely.
3. Back on gluten; "she complained of being dizzy, and her arms and legs felt shaky". Celiac Disease causes malabsorption of the essential vitamins and minerals in the small intestine.  There are a number of them that can cause this.
4. lower back pain.  "Using various imaging techniques, involvement of the sacroiliac joints was confirmed in 70% of celiac patients." Besides, they both end in 'liac'; they must be related.
5. celiac test done twice. First was a few years ago and came back negative.  10 years from symptoms to diagnosis is not uncommon
6. celiac test done twice. First was a few years ago and came back negative
7. breaking out in random rashes at random times.  Dermatitis herpetiformis (DH)  is a rash caused only by Celiac Disease.  Diagnosted by a special biopsy technique (adjacent to rash) and may have negative serology. This could be your short cut to diagnosis.
8. went on for a few months but didn’t think anything of it. Quite common.
9. doctors have no idea what’s wrong.  Almost a univeral symptom.

 

 

[Raquel2021]

2 hours ago, CatCann said:

Hello,

  I really hope it’s ok to post. I’ll start at the beginning. My daughter suffered with stomach pains for years, so decided to take her off gluten and milk. It worked! A year after we slowly introduced gluten back into her diet and she seemed fine. Starting in July of this year every so often she complained of being dizzy, and her arms and legs felt shaky. 
this went on for a few months but didn’t think anything of it. 
for the last month she has had extreme dizziness that last all day and on and off lower back pain that can be bad. She wakes with it.

These symptoms seem to get worse at night. doctors have no idea what’s wrong, but I am starting to think could it be the gluten?? She had a celiac test done twice. First was a few years ago and came back negative, and recent one also came back negative. 
There is a part of me though that feels it could be the gluten. Has anyone else had these symptoms of shaky arms and legs, dizziness, lower back pains? And she has been breaking out in random rashes at random times. I am just so lost with it all now and really just want answers. If anyone could give me anything I would be extremely great full. 
 

Many thanks, 

catherine 

I have celiac and my son had issues for years. Pediatrician could not figure it out. His tests came back negative.  His blood test I mean. I never did an endoscopy for him. He was skinny for years. Once I was diagnosed I tried the gluten free diet on him. His symptoms went all away. Went from getting Cs at school to As. He would also get angry and had stomach cramps. Would throw up after eating it all went away. You could go for an endoscopy to find out for sure. For me I never wanted to go for that if the diet worked.

[CatCann]

Ahh thanks so much for the replies, it makes me feel a bit more positive that it could be the gluten. I’ve just recently only started yesterday but going to keep going with no gluten and hopefully see some results 🤞

[Wheatwacked]

This is out in left field but gluten, like mercury poisoning, only becomes a medical issue if you consume it.

[trents]

Children should always have a "total IGA" test done in conjunction with individual antibody tests designed to detect celiac disease. If total IGA is low it can cause the tTG-IGA antibody test to drop into the negative range. The tTG-IGA is the most common and often the only antibody test run for celiac disease by many physicians. Because their immune systems aren't fully developed, children who actually have celiac disease often do not respond to antibody testing the same way as adults. Therefore, it is wise to have a "full" celiac panel: 

 

Does the rash have blisters in the bumps? If so, that is likely DH and definitive for celiac disease.

Realize also that any testing for celiac disease will be invalidated once a gluten free diet is in place.

It sounds like she has either celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for the latter. Celiac disease must first be ruled out.

Edited November 17, 2023 by trents

[knitty kitty]

@CatCann, welcome to the forum!

The test your daughter had in the past and more recently might not have given accurate results if your daughter was not eating sufficient gluten prior to the antibody test.  

Here's the updated guidelines for a gluten challenge....

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

.....

Being dizzy and experiencing muscle weakness ( feeling shaky) can be symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1.  Anemia can also cause similar symptoms, so iron levels, Folate B 9, and Cobalamine B12 levels should be checked.  

Absorption of essential nutrients is affected in Celiac Disease due to damage done to the small intestine where vitamins are absorbed.  Even on a gluten free diet, it is essential to get sufficient vitamins and minerals necessary for healing.  This can be difficult if gluten free facsimile foods with little nutritional value are substituted for nutrient dense foods.  

Our bodies keep digesting our food while we're asleep.  Pain in the back can occur due to inflammation in the digestive tract, bloating and constipation or diarrhea.  Magnesium levels might be too low.  

Rashes might be Dermatitis Herpetiformis, or caused by nutritional deficiencies in Niacin B 3, Vitamin A, Vitamin C, or B12.  

Checking for nutritional deficiencies should occur before supplementing with vitamins and minerals, otherwise the vitamins in you blood stream will reflect your supplements, giving false highs or "normal" levels.

Do discuss with the doctor the benefits of retesting for CeD after following the updated gluten challenge guidelines.

Best wishes!

Keep us posted on your progress!

[CatCann]

Thank you so much to everyone who has responded! Just so interesting to hear how gluten can really affect someone in different ways. When we had the first celiac blood test done she was on milk and gluten. Didn’t take her off it until the doctors couldn’t find a reason for her stomach pains. 
the thought of putting gluten back in her diet and seeing her decline would be very difficult to do. She’s been completely off gluten for 2 days now and I already can see a change in her. 
I can see why a lot of people end up not getting a diagnosis because you almost have to be eating gluten to get results and it really is like a poison to some peoples bodies. 
 

Her rash isn’t blisters, but a red blotch and very itchy. Sometimes it comes as 1 little hive and goes away. But it shows up randomly on her neck, back, legs, really anywhere but she says it’s very itchy. 
 

She is having bloods done again and they are checking vitamin D, I’ll see what else they will be checking. 
 

Her last blood test did come back with I believe high antibodies but they didn’t do anything about it. I’m going to get a copy of her blood works on Monday and see what it was again that was raised. The doctor said it was something allergies? I think that’s antibodies? I really don’t know about bloods, but will get the results and let you know what it was. 

[knitty kitty]

@CatCann, 

Yes, it is like poison.  Whatever happened to the Hippocratic oath "first do no harm"?  It's frustrating for sure.  Studies are being done to find other markers for Celiac.  IL-2 has been identified as a potential marker, as it says in this article...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

Has your daughter been given a genetic test for any of the known Celiac genes?  Have you been checked?  

I couldn't finish a gluten challenge, so my doctor diagnosed Celiac by genes (I've got two) and improvement on a gluten free diet.  Previous testing was false negatives because diabetes, thiamine deficiency, and anemia can affect antibody production.  

Does your daughter's rash get worse if exposed to sunlight?  Is the rash on other areas than skin exposed to sunlight? 

Yes, do try to post her blood test results here.  We're concerned here.  

Best wishes!

[trents]

3 hours ago, CatCann said:

I can see why a lot of people end up not getting a diagnosis because you almost have to be eating gluten to get results and it really is like a poison to some peoples bodies. 

Not almost because at least at this time there is no other way to get an official diagnosis.

[eekunique]

I would be getting the doctor to test her blood ferritin levels as well as B12 and vitamin D. They hardly ever test ferritin and you have to ask for it. The range is ridiculous (something like 30-250 but experts say levels should be at least 90 to feel ok. Mine are around 30 and I get the classic high five from the Dr that my bloods are all "normal". If she has celiac disease, it could cause low ferritin as well as bit D and B12. 

If you look up "iron deficiency anaemia" you will see symptoms. 

12 hours ago, knitty kitty said:

Does your daughter's rash get worse if exposed to sunlight?  Is the rash on other areas than skin exposed to sunlight?

I have polymorphic light eruption. Do you think it's related? 

[knitty kitty]

Hi, @eekunique!

Wow!  How did you get diagnosed with that?!?

Thiamine works with Niacin in the energy production cycle.  In CeD, a person is usually low across the board in the eight essential B vitamins.  Thiamine insufficiency appears first since our bodies use so much daily, especially when we're sick, emotionally stressed and physically active.  (Running to the bathroom while wondering if you can make it before you get sick or mess your pants covers all those things...)  

The Four D's of Niacin deficiency are Diarrhea, Dermatitis, Dementia and Death.  The Dermatitis is photosensitive.  A person with Pellagra develops rashes, blisters, scaling, and discoloration on sun exposed areas of the skin, like the neck, arms, and feet.  It gets progressively worse as the deficiency progresses and sun exposure continues.  Due to this discoloration, people with Pellagra were once called "red necks".  These poor farmers ate a diet without much meat (so without a good source of Niacin) and high in corn (definitely not a good source of Niacin).

When I showed the GI doctor the rash and discoloration around my neck, I was quickly ushered out of the office by the backdoor, and sent for a syphilis test.  It was negative.  No alternative diagnosis was made.  They wouldn't see me again.  There's a difference between the rash in Pellagra (around the neck) and the rash that occurs in syphilis (around the shoulders, off the shoulders)  You would expect a GI to recognize nutritional deficiencies, but no.   

I have a handprint on my arm from sitting in the sun with my hand on my arm. I have scars from the blisters and scales.  By the time I realized I was having symptoms of dementia, I questioned if this was really the three D's.  Grasping at straws, I bought Niacin supplements.  Niacin worked!  I was so thankful for the nutrition courses I took at university.  And, then my Thiamine deficiency got worse.  Take all eight essential B vitamins together!  And magnesium.  And all the rest...

Iron deficiency...Riboflavin B 2, Pyridoxine B 6, Folate B 9, Vitamin C and Cobalamine B12 are needed to make blood cells.  Just supplementing iron may not be enough.  

Niacin and Thiamine help the stomach, the gallbladder, and the pancreas make and secrete digestive enzymes so we can digest our food and absorb more vitamins.  Problems in these organs are frequent in CeD.  Malnutrition does occur in CeD.  Like Occam's razor, the simplest solution is usually the best.  

Edited November 19, 2023 by knitty kitty
Typo correction

[eekunique]

10 hours ago, knitty kitty said:

Wow!  How did you get diagnosed with that?!?

Doctor! I only get it when on vacation somewhere very sunny. 

[Wheatwacked]

14 hours ago, eekunique said:

polymorphic light eruption

My wife used to go the tanning salon in the spring to avoid her inevetable first beach day sunburn.  Irish/British complexion.  The rest of the summer she tanned normally.

I can't help but think it has something to do with low vitamin D plasma levels.  After a winter of depleting 25 hydroxy D stores, it takes the first days sunshine to raise the level and moderate the responsible gene. In the tanning bed she could raise vitamin D while limiting melanin metabolism (?)  Of course we couldn't have known why back then, but it worked for her.  I wonder if high dose vitamin D supplementation would have worked in place of UV exposure?  But she was always more relaxed after a session.

            Polymorphous light eruption  The condition is also known as polymorphic light eruption, sun allergy and sun poisoning...  during spring and early summer when exposure to sunlight increases... It leads to immune system activity that causes a rash... It's less likely to be repeated as the summer progresses. But the rash often happens again each year after the first time. 

        The ubiquitin-proteasome system in melanin metabolism  Melanocyte-inducing transcription factor (MITF) is a substrate of the ubiquitin ligase VCHL1 and acts as a transcription factor to regulate the expression of key enzymes in melanin synthesis such as tyrosinase (TYR). The rate-limiting enzyme TYR is modified by the ubiquitin ligase Hrd1 during melanosynthesis.   

[knitty kitty]

23 hours ago, eekunique said:

Doctor! I only get it when on vacation somewhere very sunny. 

I was wondering what tests were run.