Gluten intolerance?

[Emily-Sadie]

Hi, Is this the right forum to discuss non-celiac gluten intolerance?  If not, can someone suggest a good site? My 12 year old daughter has had chronic nausea for 2 months (so bad that she missed 5 weeks of school).  She was tested for Celiac disease (among other conditions/diseases), ruled out anxiety, constipation, eating disorders, kidney diseases, acid reflux, vertigo, etc). We started a gluten free diet about a week ago and it seems to be helping (seeing a definite decrease in nausea). Hopefully, we are on the right track - we are learning as we go. Wondering if nausea is a common problem for those who are gluten intolerant? Also wondering, she had protein in her kidneys but that went away since the gluten free diet - is protein in the urine a common finding? 

[cyclinglady]

2 hours ago, Emily_Sadie said:

Hi, Is this the right forum to discuss non-celiac gluten intolerance?  If not, can someone suggest a good site? My 12 year old daughter has had chronic nausea for 2 months (so bad that she missed 5 weeks of school).  She was tested for Celiac disease (among other conditions/diseases), ruled out anxiety, constipation, eating disorders, kidney diseases, acid reflux, vertigo, etc). We started a gluten free diet about a week ago and it seems to be helping (seeing a definite decrease in nausea). Hopefully, we are on the right track - we are learning as we go. Wondering if nausea is a common problem for those who are gluten intolerant? Also wondering, she had protein in her kidneys but that went away since the gluten free diet - is protein in the urine a common finding? 

Hi Emily!  

I did move your post.  It honestly does not matter, but the behavior section discusses things like depression or anxiety.  The purpose of the forum sections is to allow other members to be able to find information easily.  Gluten Intolerance covers a broad spectrum of gluten issues like celiac disease or Non-celiac Gluten Sensivities/Intolerance.  

Let’s get down to helping you.  

Celiac disease can impact many different organs besides the small intestine.  So, yes, the kidneys can be affected.  Nausea is also common and can be attributed to celiac disease or a co-existing issue like H.Plylori (which will not resolve without antibiotics usually).   A gluten free diet should improve these conditions for a celiac.  

How was celiac disease ruled out?  Was she evaluated by a PED Gastroenterologist?   Did you know there are several tests that look for antibodies?  Often doctor’s order, the effective but not perfect,  TTG.  This test does not catch all celiacs (like me).  Consider looking at her lab work which should be in your possession.  Also, some celiacs are seronegative.  Some are Immunoglobulin A deficient and that effects celiac blood testing.   That is something to consider.  

I am glad that she seems to be responding to the gluten free diet.  There is a steep learning curve, so I suggest you read the thread pin at the top of the Coping section for tips.  Your best defense is education!  I strongly recommend a diet of non-processed foods and no eat8ng out until you see results.  Cross contamination is a huge issue with this diet.  But the end result is improved health.  My heart goes out to your daughter.  I wish her well.  

You have reached the right place.  This is a very active forum for anyone who has issues with gluten.  

 

 

Edited December 26, 2018 by cyclinglady

[Emily-Sadie]

Thank you so much for your input. We are pretty clueless and information like this is a very helpful guide.  It's been a long windy road to nowhere and we were pretty unsettled by everything (ignorance was not bliss in this case). When they found protein in her urine, that was a huge concern to everyone and after several visits, labs, U.S., pedi nephrology workup, etc, they scheduled a biopsy but then the protein counts went down so it was postponed. And now, just this week, her protein counts are normal (could be this gluten free diet or something else - not sure).  We tried the gluten thing on our own based on some research I did online and not really having any clear direction from her providers, we had to try something. We did see a Pedi GI doc last week and he suggested functional anxiety (I think that is what he called it) and possible bacteria in the small intestines (which she did undergo a hydrogen breathing test). We expect to hear back from them today/tomorrow with the results.

You make a good point - I will be requesting all of her medical records this week. I am not sure what test they did for Celiac. I believe the Nephrologist ordered this among many, many other blood tests (and urine and stool).  The tricky thing with my daughter is that she has/had absolutely no other symptoms.  Great appetite, no fever, no vomiting, normal BMs, no swelling, no rashes, no stomach aches or bloating, no problems with her eyesite, etc.  She is a very healthy kid with really bad nausea which became much worse with any movement.  

I will definitely read the Coping section you have recommended and take everything you have said into consideration. I am just glad she is finally starting to feel better and acting more like a normal kid.  I don't want to jeopardize that and am so grateful for any tips and advice. 

[Shado]

I have had environmental allergies [GRASSES, weeds ,trees] as long as I can remember and  my food sensitivities / allergies probably also went  way back..but I don't recall. At age 12 I had a fairly intense allergic reaction to something  I had eaten many times before without issue..I believe it was due to overdoing it .. I ate a big bag of pistachio nuts..and suddenly I had a new allergy. and from then on. I couldn't eat pistachio nuts.... I believe this is how many allergies start. As an RN,  I have a  good grasp of physiology ,the function of tissues and how they behave. ..and so it makes perfect sense to me that a gut lining that is reacting ..call it  celiac disease or call it an allergy or a sensitivity..or a mechanical -type trauma to the tissue...  for example, eating a very irritating substance [super spicy hot food for example, or something that otherwise is not particularly cell friendly.....an IRRITANT in other words. Once the gut lining is disrupted , it only stands to reason you have  altered absorption...leading to larger molecules passing through which normally would not do so in a healthy intact undisturbed gut lining...and it is thought that this is how allergies develop...so ..while there was an MD  on one of these forums stating that "cross reactivities" were nonsense.....but he/she didn't bother to suggest a viable answer to this thing that people feel they are experiencing. When I was younger and having allergy issues[ before I was an RN and knew what I was talking about]  I had my own theory...I thought that my body was developing new allergies as a result of association. In other words..i had something in my system that I had a sensitivity to ..and my body was developing a reaction to something else I had eaten because it was associating the allergic reaction with a new food that was present at the time of reaction. As it turns out...this is not too far off the mark..except it wasn't happening by association, but because larger molecules of the new food which could be recognized as foreign proteins wer passing through  the disrupted gut membrane...due to the presence of an actual allergen. So..no technically there are no "cross reactions", but  it seems quite possible that new reactions can result from foods being present while an actual allergic reaction is taking place. I would like to address something else I saw being poopooed by an MD on one of these forums. The question of sinus issues being related to celiac or allergy. I have had chronic sinus issues for many years and can tell you...as I am quite in tune with my body...I know without a doubt that what's going on in my gut causes sinus inflammation and sinus pain. I should mention that clearing away the gut issues doesn't guarantee no more sinus problems  as ther can be other factors that exacerbate sinus problems such as what you are breathing ...allergens..or just irritants such as smoke or chemicals like fragrances..and once sinuses are inflamed and closed off,[unable to drain normally] they readily develop a new infection or worsening of an already present bacterial or fungal issue...As someone in the health care field..I can attest to the fact there are a lot of people with incomplete understanding of physiology and reading a lot of nonsense on the internet and coming up with crackpot ideas..on the other hand it is discouraging to have MDs so readily dismissing their clients who know all too well what they are experiencing and suffering....not bothering to look for a reasonable explanation... leading to misdiagnoses and missed diagnoses. Anyway...I have had off and on issues but most recently..the past 6 months or so I have had ever increasing problems [ I think due to taking snack bars with me to eat in the car during my work day..which are mainly wheat rye triticale and barley...with lesser amounts of non gluten grains in them ..the list of symptoms are too long to list..many of the usual common ones but also some very disturbing ones  such as dizziness ,ataxia, clumsiness and one morning I woke up with the room "spinning"  exactly as it would after having way too much to drink. That..along with my sinuses getting extremely painful every evening and headaches and stiffness up the back of my neck and under my skull...interestingly I read that the cerebellum can be affected by gluten sensitivity..and I find it interesting that is exactly where I was having my headache..along with my eyeballs and sinuses. I haven't diagnosed anything but I think I have had an important breakthrough realization about what my diet needs to be if I want to do away with all those problems and likely improve my depression and anxiety too..as I understand that is another link. ...Brain fog,  fatigue, itchy skin and bum, bloating , gas, stomach gnawing, insomnia, sinus pain headache, stiffness in the back and neck, soft pale-coloured stool, [frequent} , trouble making decisions and focussing, numbness in toe, irritability..and so on...I have experienced much better health eating non gluten grains...but until now I just thought they agreed with me better,,now I realize it is much  much more than that. I hope this has been helpful to others. ..take care. 

[Awol cast iron stomach]

Yes, I get nausea very much so.  I don't know if I have ever shown protein in my urine, but my kidney and bladder issues were one of my earliest memorable symptoms at age 5. I begged to go to Dr for.  At age 2 I had constipation and diaper rash, I now believe was DH. I recall asking for destin. I could not say it yet. My mom would say your dry, but I would say "fishy stuff" and point where I wanted it. I called it fishy stuff because at the beach it smelled of fish, the zinc oxide  covered lifeguards, and my kid thought was fishy stuff. By 9, I regularly had hives, mostly got sick with "stomach virus", canker sores down my throat, that had me on liquids until they went away. Then it was believed to be a virus, I now suspect gluten related. The roof of my mouth sometimes peeled. At 11 brain fog was rampant and I threw up full length undigested spaghetti noodles again "stomach virus". By early 20 ' I was visiting Dr regularly trying to figure out what was wrong with my gi. Being put on an iv in hospital usually helped with unknown gastroenteritis. 

Decades went on with more symptoms etc as I often was misdiagnosed IBS, etc. My current diagnosis is NCGS, but I can't finish my gluten challenge . After finding and joining the forum I live as a celiac with a gluten-free home, no eating out, only a few processed foods. I now know my former Puppp rash (another missed opportunity is DH ?) . Tonight I sit with patches of DH , slathered in zinc oxide  ? as I was exposed to unknown skin contact with gluten at work on Friday. 

Regardless of NCGS or Celiac welcome to the forum, and continue to learn to keep your little one safe. As my symptoms got worse after 4 decades of misdiagnosis. Anytime a young celiac can avoid Ataxia and neuropathy is Good news to me.

It she gets hit with symptoms of uti with lack of  uti matching results, spasming of bladder, feeling of urinary frequency, or urination does not result in relief suspect gluten. Nausea when eating something new when  consistent periods of non nausea have been met with a gluten-free diet suspect gluten.

Good luck and healthy healing for your girl

[frieze]

oh,oh, and oh!  if the nausea is worse WITH MOVEMENT, it may not be GI at all!  get thee to an ENT, and if that does not help, a neurologist.  this does NOT rule out gluten as a causative agent.

[Emily-Sadie]

Thank you Shado and Awol for sharing. I am so sorry you have had so many health struggles and discomforts; my heart goes out to you.  Your input is very much appreciated. 

Frieze, yes, ENT and Neuro are both on the list - thank you. I agree, gluten is a factor here as well. 

And, it turns out she does have a GI issue - she found out late yesterday that she tested positive for SIBO (small intestinal bacterial overgrowth) and they prescribed 2 antibiotics, then she will start probiotics and a low sugar diet. This SIBO is not easy to research online - so we are going to have an educational session with the Pedi Gi doc as soon as we can as there is a lot of conflicting information.  The gluten free diet is helpful for this condition though - per research online and my daughter's symptoms getting better on a gluten free diet.

Edited December 28, 2018 by Emily_Sadie

[Awol cast iron stomach]

On ‎12‎/‎28‎/‎2018 at 7:03 AM, Emily_Sadie said:

Thank you Shado and Awol for sharing. I am so sorry you have had so many health struggles and discomforts; my heart goes out to you.  Your input is very much appreciated. 

Frieze, yes, ENT and Neuro are both on the list - thank you. I agree, gluten is a factor here as well. 

And, it turns out she does have a GI issue - she found out late yesterday that she tested positive for SIBO (small intestinal bacterial overgrowth) and they prescribed 2 antibiotics, then she will start probiotics and a low sugar diet. This SIBO is not easy to research online - so we are going to have an educational session with the Pedi Gi doc as soon as we can as there is a lot of conflicting information.  The gluten free diet is helpful for this condition though - per research online and my daughter's symptoms getting better on a gluten free diet.

Excellent news that the Pedi Gi addressing the SIBO. I was ok no SIBO at diagnosis, but found water kefir helpful in healing. So those probiotics in my opinion will help. Thanks for your kind words. I am fortunate now to be able to share some of my past experiences I hope to aid others. Not to scare, but as I said if I can prevent a younger celiac from getting to ataxia and neuropathy stage then I have achieved my purpose. Good Luck.

[Awol cast iron stomach]

Yes, it is I again. I wanted to send you one more link. I have been thinking about your little one. I hope and wish for her all your doing for her is met with swift and succinct clarity for her health and well being. As I was once her at a decade where not much was known about properly recognizing Celiac in someone who was not a textbook case at the time. I am so hopeful that has possibly changed.

Also ironically I was cc on Friday the 21 st so my own symptoms can reemerge as well. Making your gal more present in my mind. Still not sure as I ate no new processed food items, but started a new job, lots of gluten around for holiday spirit, I am meticulous but sometimes it gets by. Some cc or hand soap or something I did not wash adequately. I somehow got myself.

As I said before my bladder/kidney stuff was age 5

GI has been lifetime-always present that it was just "me"

Lastly, yes I get neuropathy, ataxia, DH as well

All these things remerge for me while cc

Here is an article on small fiber neuropathy. Since they are ruling out vertigo, dizziness, anxiety etc. In case she is getting those symptoms. I hope not, but if not you and Neuro can review your concerns of Gluten intolerance/celiac as a potential factor.

https://www.glutenfreeliving.com/gluten-free/celiac-disease/neurological-symptoms-celiac-disease/

I do get these symptoms myself. Once you make the allopathic rounds if your daughter still struggles a thing you may consider alternatives. After my 2016 gluten challenge my Dr. in passing mentioned TCM to me, she knew I often used chiropractors in past. I have found it helpful is to see a chiropractor/acupuncturist. TCM is not for everyone, but for me it helps me manage my symptoms when my body/every organ system I have gets knocked offline by the occasional cc. 

Good luck