Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neurological Symptoms, Hormone Problems & Insomnia?


Melisma

Recommended Posts

Melisma Newbie

Yesterday afternoon I received the results of a stool test confirming that I have a gluten sensitivity. I intend to go gluten free right away.

Since February, my stomach and gut have been hurting etc. I'm relieved to find out the reason why. My question is about other symptoms that I'm experiencing and whether they can be connected to gluten sensitivity. My hormones have obviously changed recently because my period returned last month 8 months postpartum. With it has come chronic insomnia and strange neurological symptoms: burning at the back of my head, pressure in my ears, a stiff painful neck, pain that shifts the whole length of my spine, a stiff spine, occasionally my hands and feet sweat and feel numb. Sometimes I get waves of "burning" chills along my spine and back and into my hands and feet. This is all worse at night. When the waves of symptoms come at night, I also feel panicky (but I don't feel short of breath like as in a classic panic attack). I am exhausted during the day and feel weak and shaky. Can gluten sensitivity be related to hormonal problems or explain any of my seemingly neurological or nervous system issues? Has anyone else experienced these symptoms? I am not experiencing any impaired motor control.

Thanks in Advance!

Melisma


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

Have you been checked for diabetes? That can cause neuropathy, but so can gluten. What hormones are an issue? You should see a doctor and tell them all your symptoms. It might just be gluten intolerance but you should let them check you out too. I had the anxiety and insomnia when I had Graves disease (thyroid juicing up too much).

Melisma Newbie

Hi Nancy

I've gone to docs a couple times with this episode. My routine bloodwork is all normal. I've even had the extra testing on thyroid and it comes back normal. I have a neurologist appt. on Monday...

Melisma

Aunt Poppy Rookie

Melisma, I had exactly the same symptoms except that I also had jerky movements of the hands, arms, legs and feet when I laid down to go to sleep. It all drove me crazy and scared me to death. After several blood tests, a colonoscopy and biopsy of the small intestine, my GI insists I do not have Celiac (I have sent my stool to Enterolab for further testing.) I do have IBS after taking several rounds of antibiotics and was hospitalized. That was six weeks ago and I am just now coming around. I went gluten free two weeks ago and followed a very strict diet (baked potato, rice, banana, small amount of yogurt, chicken breasts, lima beans and apple sauce) and I am better. I still have some 'jerks' , periodic burning chills and am weak. I am alos taking Platinum Plus and a probiotic. Those seemed to really help and get me started feeling some better. The biggest relief is knowing what was happening. My friend and chiopractor says the burning chills and jerks are from stool passing along the inflamed nerves of the intestine. Once the intestestines heal that will all end and it is better now. Like you I felt awful and am still not absorbing much nutrition, but I eat several times a day and drink gatorade and Pedialyte. The Pedialyte will replace necessary electrolytes. Don't give up. I have a long way to go, but am definitely better and had every symptom you had except the neck and spine pain-I had headaches. My chiopractor has helped more than anyone with accupuncture and I NEVER thought I would be going to a chiopractor, especially for accupuncture.

Yesterday afternoon I received the results of a stool test confirming that I have a gluten sensitivity. I intend to go gluten free right away.arted on the right track. Your drug store should carry them or be able to get them.

Since February, my stomach and gut have been hurting etc. I'm relieved to find out the reason why. My question is about other symptoms that I'm experiencing and whether they can be connected to gluten sensitivity. My hormones have obviously changed recently because my period returned last month 8 months postpartum. With it has come chronic insomnia and strange neurological symptoms: burning at the back of my head, pressure in my ears, a stiff painful neck, pain that shifts the whole length of my spine, a stiff spine, occasionally my hands and feet sweat and feel numb. Sometimes I get waves of "burning" chills along my spine and back and into my hands and feet. This is all worse at night. When the waves of symptoms come at night, I also feel panicky (but I don't feel short of breath like as in a classic panic attack). I am exhausted during the day and feel weak and shaky. Can gluten sensitivity be related to hormonal problems or explain any of my seemingly neurological or nervous system issues? Has anyone else experienced these symptoms? I am not experiencing any impaired motor control.

Thanks in Advance!

Melisma

marciab Enthusiast
My hormones have obviously changed recently because my period returned last month 8 months postpartum. With it has come chronic insomnia and strange neurological symptoms: burning at the back of my head, pressure in my ears, a stiff painful neck, pain that shifts the whole length of my spine, a stiff spine, occasionally my hands and feet sweat and feel numb. Sometimes I get waves of "burning" chills along my spine and back and into my hands and feet. This is all worse at night. When the waves of symptoms come at night, I also feel panicky (but I don't feel short of breath like as in a classic panic attack). I am exhausted during the day and feel weak and shaky. Can gluten sensitivity be related to hormonal problems or explain any of my seemingly neurological or nervous system issues? Has anyone else experienced these symptoms? I am not experiencing any impaired motor control.Thanks in Advance!Melisma

Melissa,

Definitely see your doctor, but keep in mind that gluten could be causing a lot of these symptoms too.

I think you have a couple of things going on here ... You said you just had your first period 8 months post partum. That's a very long time to go without a period.

I entered menopause (no periods) last June and the waves of symptoms you have sound a lot like my hot flashes. Before I actually break out into a sweat, I wake up from a dead sleep, heart pounding and feel panicky. You don't have to sweat when a hormone rush happens. Lucky for me I always break out in a sweat from head to toe, so I know it's my hormones.

I have had all kinds of nuerological symptoms related to gluten. Ataxia, myoclonus ... Luckily, many of them have been resolved just by eliminating gluten.

And your weakness and skakiness could be from low blood sugar (hypoglycemia). Those are two very normal symptoms for hypoglycemia and it is common with celiac. Try eating a meal (protein is a must and some of us have to eat meat) every 2 - 3 hours and see how you do. Avoid sweets and caffeine. Your doctor can run a glucose panel on you, but you can also just eat every few hours to see if it helps ...

Marcia

GeoffCJ Enthusiast

I had a lot of GI issues, problems with my hands and feet tingling and going numb, and or pain in my hands and feet, and insomnia. I hadn't actually realized how bad my sleep was until after going gluten free and actually getting a good nights sleep!

Geoff

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    2. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    4. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    5. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748

    SarahZ
    Newest Member
    SarahZ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.