Arachnoid cyst in spine found at the same time as Celiac diagnosis

[LMNmom]

My 4 yo daughter has had a variety of symptoms over the past year, mainly with constipation, no weight gain, gait abnormalities, and the inability to bend at the waist. She was diagnosed with Celiac Disease around the same time that they discovered an arachnoid cyst on her lower spine. After seeing many specialists, doctors still don’t know why she can’t bend at the waste. Has anyone experienced these symptoms with Celiac? Has anyone heard of developing arachnoid cysts from eating gluten (if you have celiac)?

[trents]

Welcome to the forum, LMNmom!

Some questions:

1. How long ago was your daughter diagnosed with celiac disease?

2. Do you now have her on a gluten free diet?

3. Have the other issues besides the inability to bend at the waist gotten better since going gluten free, assuming that you have her on a gluten free diet?

4. Has anything been done about the arachnoid cyst or are the doctors just watching it for now?

5. Do her doctors think there is any connection between the cyst and the inability to bend at the waist? The problem could be neurological but I'm thinking the midsection of the body is innervated lower down on the spinal column than where the cyst is found. I have not heard of this problem being connected to celiac disease. But, we are finding out new things all the time in connection with celiac disease.

[LMNmom]

7 hours ago, trents said:

Welcome to the forum, LMNmom!

Some questions:

1. How long ago was your daughter diagnosed with celiac disease?

2. Do you now have her on a gluten free diet?

3. Have the other issues besides the inability to bend at the waist gotten better since going gluten free, assuming that you have her on a gluten free diet?

4. Has anything been done about the arachnoid cyst or are the doctors just watching it for now?

5. Do her doctors think there is any connection between the cyst and the inability to bend at the waist? The problem could be neurological but I'm thinking the midsection of the body is innervated lower down on the spinal column than where the cyst is found. I have not heard of this problem being connected to celiac disease. But, we are finding out new things all the time in connection with celiac disease.

She was diagnosed mid May and we started a gluten free diet immediately. The constipation has gotten better and we were able to fully wean her from the miralax. She has gained a little weight as well. The ability to bend at the waist has not improved. The neurosurgeons say that the cyst is not directly related to bending at the waist and often these type of cysts are asymptomatic. However, they have no other reason or explanation. They are willing to operate (fenestration of the cyst) to see if that is the cause. We have been seeing specialists for so long now, the celiac came as a surprise shortly after we found out about the cyst, so just crazy that we have two issues presenting at the same time. There could be a relation or maybe not. We may never know! 

[trents]

Has imaging been done (Xrays, MRI, CT Scan) of her lower spine and hips? Does she appear to be guarding to avoid pain when attempting to bend at the waist?

[Wheatwacked]

"Idiopathic arachnoid cysts in children are associated with neural tube defects." https://pubmed.ncbi.nlm.nih.gov/622492/

"An arachnoid cyst is a noncancerous fluid-filled sac that grows on the brain or spinal cord. Symptoms include headaches and seizures, but many arachnoid cysts don’t cause symptoms. Treatment isn’t always necessary. Providers drain or remove cysts that cause symptoms." Arachnoid Cysts Cleveland Clinic 

Often Celiac Disease is discovered accidentally in the course of other diagnostics, so good it was found now instead of twenty years from now.  Neural tube defects are related to maternal deficiencies of choline and folate.  It could be dietary deficiencies, it could be due to malabsorption. Wheat flour is fortified with folic acid since 1998 because the western diet is low and only 10% eat the recommended amount of choline. 10% of first degree relatives have celiac disease means there is a chance that you have undiagnosed Celiac Disease also and should get tested.

Sebacious Cysts run in my family on mom's side. She my two brothers and I have them periodically behind the ears, I have one (third eye blind) and oddly my brother had one at the same time in the same place. Since starting GFD no new ones.

Cysts form to isolate something from our bodies. They have different names it seems depending on the location. My third eye blind had a one millimeter hair ball in it. My older brother had a cyst on his lung. Since he was 15 years after having a lung removed for cancer, they removed the cyst with 10% of his remaining lung. It turned out to be a tiny bit of sawdust. Could have left it. The danger in the cyst is that if it grows it presses on other tissue and that causes symptoms. They don't go away unless drained and the core scraped and removed, but are otherwise benign. In that way it seems to me, a protective device.

Fenestrating (drain and scrape) may relieve pressure on some nerves and may resolve the issue. Watching for now if it is not changing and see how she does with GFD might be appropriate. Some are simple to remove, hey just pop out once exposed; some like my family send out "roots" so the removal is not so easy. 

Your surgeon will be the best judge.

Quote

"Risk for neural tube defects was 2.4 times higher in women with the lowest blood choline levels compared to women with average blood choline levels. The highest blood choline levels were associated with the lowest risk"  https://med.stanford.edu/news/all-news/2009/08/low-choline-levels-in-pregnant-women-raise-babies-risk-for-brain-and-spinal-cord-defects-study-shows.html#:~:text=“As choline levels went up,associated with the lowest risk.

 

Edited June 26, 2022 by Wheatwacked

[LMNmom]

9 hours ago, trents said:

Has imaging been done (Xrays, MRI, CT Scan) of her lower spine and hips? Does she appear to be guarding to avoid pain when attempting to bend at the waist?

Yes, full MRI was done which showed the cyst. She is altering her movements to avoid what hurts for sure. She just stops bending at the waist and can’t go any further. 

[LMNmom]

6 hours ago, Wheatwacked said:

"Idiopathic arachnoid cysts in children are associated with neural tube defects." https://pubmed.ncbi.nlm.nih.gov/622492/

"An arachnoid cyst is a noncancerous fluid-filled sac that grows on the brain or spinal cord. Symptoms include headaches and seizures, but many arachnoid cysts don’t cause symptoms. Treatment isn’t always necessary. Providers drain or remove cysts that cause symptoms." Arachnoid Cysts Cleveland Clinic 

Often Celiac Disease is discovered accidentally in the course of other diagnostics, so good it was found now instead of twenty years from now.  Neural tube defects are related to maternal deficiencies of choline and folate.  It could be dietary deficiencies, it could be due to malabsorption. Wheat flour is fortified with folic acid since 1998 because the western diet is low and only 10% eat the recommended amount of choline. 10% of first degree relatives have celiac disease means there is a chance that you have undiagnosed Celiac Disease also and should get tested.

Sebacious Cysts run in my family on mom's side. She my two brothers and I have them periodically behind the ears, I have one (third eye blind) and oddly my brother had one at the same time in the same place. Since starting GFD no new ones.

Cysts form to isolate something from our bodies. They have different names it seems depending on the location. My third eye blind had a one millimeter hair ball in it. My older brother had a cyst on his lung. Since he was 15 years after having a lung removed for cancer, they removed the cyst with 10% of his remaining lung. It turned out to be a tiny bit of sawdust. Could have left it. The danger in the cyst is that if it grows it presses on other tissue and that causes symptoms. They don't go away unless drained and the core scraped and removed, but are otherwise benign. In that way it seems to me, a protective device.

Fenestrating (drain and scrape) may relieve pressure on some nerves and may resolve the issue. Watching for now if it is not changing and see how she does with GFD might be appropriate. Some are simple to remove, hey just pop out once exposed; some like my family send out "roots" so the removal is not so easy. 

Your surgeon will be the best judge.

 

Thank you for all of this information. The surgeon said it can only be fenestrated since it is webbed in the nerves. 
I will definitely be getting checked for Celiac as well. 

[C4Celiac]

because her stomach probably hurts when she bends

I couldn't bend over to tie my shoes when it first started

[cristiana]

I have an arachonoid cyst in my brain which a neurologist told me was "of no clinical importance".  It is always noted on MRI scans as an incidental finding, and was found about nine years before my coeliac diagnosis when I started to get aura migraines.  As far as I know it has never changed in size, I seem to recall my neurologist told me it would have developed in the womb? In those days there were no ultrasounds but perhaps it might have shown up had there been such technology.  I just looked up their prevalence and quite coincidentally this study says it affects about 1 per cent of the population, similar to coeliac disease, but I have never been told of any link with coeliac disease.  

https://www.sciencedirect.com/science/article/pii/B9780128099322000090#:~:text=Arachnoid cysts (ACs) are fluid,are more affected than women.

[LMNmom]

10 hours ago, C4Celiac said:

because her stomach probably hurts when she bends

I couldn't bend over to tie my shoes when it first started

How long after starting the gluten free diet were you able to bend comfortably? 

10 hours ago, cristiana said:

I have an arachonoid cyst in my brain which a neurologist told me was "of no clinical importance".  It is always noted on MRI scans as an incidental finding, and was found about nine years before my coeliac diagnosis when I started to get aura migraines.  As far as I know it has never changed in size, I seem to recall my neurologist told me it would have developed in the womb? In those days there were no ultrasounds but perhaps it might have shown up had there been such technology.  I just looked up their prevalence and quite coincidentally this study says it affects about 1 per cent of the population, similar to coeliac disease, but I have never been told of any link with coeliac disease.  

https://www.sciencedirect.com/science/article/pii/B9780128099322000090#:~:text=Arachnoid cysts (ACs) are fluid,are more affected than women.

Thank you! I had never heard of them before but it is interesting that they are so common and don’t cause any symptoms in certain cases. 

[C4Celiac]

a few months

[Wheatwacked]

@C4Celiac has a good point. It might be worth more healing time on GFD with appropriate nutrition and see if she improves. Why does she say she can't bend over? Because it is uncomfortable or does it hurt, sharp or dull? Could she give it say six months? A lot depends on her pain tolerance and there is not a guaranty the cyst is the problem. Sometimes bending over when bloated makes me feel like throwing up from all the pressure inside, so I don't.

[LMNmom]

58 minutes ago, Wheatwacked said:

@C4Celiac has a good point. It might be worth more healing time on GFD with appropriate nutrition and see if she improves. Why does she say she can't bend over? Because it is uncomfortable or does it hurt, sharp or dull? Could she give it say six months? A lot depends on her pain tolerance and there is not a guaranty the cyst is the problem. Sometimes bending over when bloated makes me feel like throwing up from all the pressure inside, so I don't.

It is difficult to get clear answers from her. Understandably, her body awareness is not very good. She never complains of her stomach hurting. Her symptoms were constipation and weight loss. However, she could definitely be guarding for the pain and just not explaining that to us. Thank you for your thoughts! 

[Wheatwacked]

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D. NEW YORK.  https://www.scdrecipe.com/scd-uploads/studies/1924-haas_banana.pdf

These are his original published case files when it was called Infantism and mortality was high. My adaptation of his diet is lean ground beef, roast turkey breast, oranges, bananas, bell peppers, red leaf lettuce, cottage cheese, hard boiled eggs.  It took care of some minor upset stomach in the middle of the night, and I feel more energy. The down fall of this diet in the 1950's was the discovery of gluten.  I would skip the enema, although somehow he knew the gut biome needed work.