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How To Get Family To Be Supportive

jackay

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jackay Enthusiast
jackay
Posted

I have had insomnia for four years and try everything I hear of to help sleep. I haven't found anything that helps. I know I have good sleep hygiene. My daughter commented that a lot of people don't sleep. I realize that, but the body and mind need sleep. Most people that don't sleep don't just accept the fact that they can't sleep but try different things to help them.

My daughter was so miserable with sleep deprivation for six months from an infant that didn't sleep. They came to stay with me this summer and since I don't sleep, I listened to her baby at night while my daughter slept with ear plugs. After two nights of sleep, my daughter was a new person. Also, after two nights of letting her baby cry, the baby started sleeping through the night. That just goes to show what sleep does for a person. Both my daughter and her baby became much happier. I was happy that I could help her out but would have been even happier if I could have started sleeping, too.

I have done a lot of reading on line and books about gluten intolerance. I told my daughter that any amount of gluten does damage and that I have to eliminate every trace of gluten from my diet. My daughter suggested I stop reading :(

My husband continues to eat his gluten and I don't want to deprive him of it. However, I am concerned that I am going to contaminate my food with crumbs that he doesn't clean up. He likes to bake cookies and I am concerned about the flour getting everywhere.

I need to vent and feel lots better:) I personally know of no one that is gluten intolerant so really appreciate the support of this forum.

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NorthernElf Enthusiast
NorthernElf
Posted

I have heard taking a B complex can help sleep - a lady I work with swears by this. I take one anyway (good idea for celiacs) but I found it's better to take in the am (she takes hers in the pm). I don't have sleep problems.

As for the contamination issue - I have gluten-free signs on most of my counters & on my toaster and the gluten folks in my house have one counter. I got rid of the bread maker - too many crumbs. That was still hard - then I bought an island from walmart for about $200 and all the bread, muffins, and the gluten toaster are on it. That has really helped. It has drawers too and I put the gluten utensils and measuring cups and plastic containers in there too. My baking stuff is mostly silicone so it's easy to tell what is mine.

My friends & family finally get it. It took awhile - I think that thing that helped was my consistency in eating gluten-free....and my feeling better of course. It can be hard for people to get you changing your diet, no longer eating what you normally did, what they normally do. It can be hard for them to get that you HAVE to change. Of course, when you start feeling better they start to see how effective the change is.

Best of luck !

ang1e0251 Contributor
ang1e0251
Posted

I think insomnia is like a migraine headache; there can be more than one reason you suffer from it. I have found that some of the things that work for others also work for me but often not. The B complex is good advice for most of us with celiac disease as it's easy to be deficiant but I would caution not to take it at night. They perk me up and if I take them after noon, it interferes with my sleep.

I've taken melatonin with good results for years. Over the years I have gradually increased the amount to 6 mg's but that is still minimal. My dr poo poos that dose as not even close to harmful. It helps me fall asleep. I still wake throughout the night but I can return to sleep successfully. I've heard there is a time release type but I haven't tried it. I saw a big benefit when I increased my magnesium intake. I didn't expect it to help my sleep but it relaxes the muscles and veins. I was having tight neck muscles that made finding a comfortable position difficult. That cleared up with the magnesium.

Another reason for poor sleep can be low blood sugar. If this is a problem, you may need to eat a protein snack before bed and avoid carbs in the evening.

Hope something in there helps, there are other helps for insomnia if none of these are worthwhile.

ksymonds84 Enthusiast
ksymonds84
Posted

Benadryl is also a safe option for insomnia. My son's doctor suggested it for him. It can make you a little drowsie in the morning though, so if you have to be somewhere very early you may want to use it on the weekends only.

NorthernElf Enthusiast
NorthernElf
Posted

ang1e0251 - I meant to add that taking the B complex at night might not help sleep - that's why I take mine in the am....I did try to take it in the evening after my friend said how helpful it was but I did find it kept me awake ! Great advice !

jackay Enthusiast
jackay
Posted
  • Author

I'll see what my doctor has to say about the B complex. I am taking B5B6 in the a.m. as a drastically reduced dose from what he suggested. The first day I took one whole supplement and literally went through the roof with anxiety. I didn't sleep at all that night. I am now taking 1/4 of a tablet. Didn't sleep a wink last night again so am even more nonfunctioning today. I thought the B5B6 was helping calm down my loud pulse but that it has gotten louder again.

It puzzles me that I am so sensitive to supplements since I have absorption issues. If I don't absorb them, why do they bother me? Guess they are no different than foods.

jackay Enthusiast
jackay
Posted
  • Author

As an afterthought, I have tried both 3 mg. and 6 mg. melatonin and still have sleep issues. My doctor said to stick to 3 mg. since 6 mg. wasn't doing any more. I don't know why I even take the 3 mg. since it isn't helping. I also take magnesium and my doctor feels the amount shouldn't be increased. Taking a higher dose of magnesium in the past didn't help.

Tonight I'll try Benadryl again but that hasn't worked for me either. Hopefully I'll find the right combination soon.

I am so frustrated :(

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  • 2 weeks later...
jackay Enthusiast
jackay
Posted
  • Author

My DH is now being supportive. It sure makes living with this easier. My son and his wife called to see if it was O.K. for them to bring some french bread and scented candles with when they come for Christmas. I am allowing bread in the house but was pleased that they called and asked it if was O.K. As far as the scented candles go, we can give them a try. I do react to quite a few scents.

I think my DH is actually seeing that I feel better and has decided this may actually be working. He has a friend whose wife is sensitive to fish and it can't be cooked in their house because her reaction is so severe. He now relates that to my gluten sensitivity.

I'm sure my daughter will come around, too.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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    • Wheatwacked
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      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
      My only proof

      By NanceK · Posted

      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
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      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.  
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