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

Anyone Ever Feel Like Giving Up?


Gfresh404

Recommended Posts

domesticactivist Collaborator

It makes perfect sense that you are having a hard time... you are trying your best to do what you need to do for your health, yet you still feel like crap! Anyone, especially when dealing with depression or other mood disorders is going to feel bad.

We noticed that just being gluten-free was not enough for our family. GAPS made a big difference for us, and addressed the mental health side of the issues. You might look into it. (I have a GAPS Resources page on the blog linked from my profile). It may seem impractical to do in college, but actually if you have a crock pot, a freezer & fridge, a hot plate, a sink, and a cupboard or counter space, it's doable.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I feel like giving up too.

My Dr. questions my DX because I'm newly DXed at the age of 54. She said it should have shown up sooner if I really have it. I said I thought I had a soy sensitivity too, because I get all sorts of neuro symptoms if I ingest it. She said "soy can't do that".

My blood work was negative, but biopsy showed flattened villi and a couple of ulcerations.

I asked her for a Hashi's test because I seem to have a lot of symptoms, and she said no. She did agree to testing my TSH level though. I won't find out the results until I go back in 2 months.

My GI doesn't seem to know much about Celiac? She ordered blood tests for vitamin/mineral levels and they weren't too bad at that time. She told me to just not eat gluten and I'd be fine. When I asked about my damage and the Marsh scale she didn't know what I was talking about.

I feel tired, depressed, hopeless. On Satarday night I talked to my son on the phone and he suggested I contact the various treatment centers and see if they could recommend an experienced Dr. in my area. I told my hubby I thought I should try it. On Sunday morning I logged onto the computer to check emails, etc. Hubby came into the room and asked if I had contacted the places yet. I told him I had just logged on and hadn't even made coffee yet. He yelled at me that I wasn't trying to do anything to help myself and that I'm just a whiner..went on and on. :(

I am always vigilant about making sure I'm not consuming even traces of gluten, but my hubby and son still eat it. Neither one is the least bit careful about trying to keep it contained.

I picked up the TV remote and it was covered with bright orange powder from cheese curls they had been eating. When I told them they keep poisoning me they told me I was rediculous.

I feel like crap, and I'm tired. I don't want to eat..in fact I've gotten so I'm afraid to eat.

I'm taking a handful of vitamins/minerals every day and use melatonin to sleep.

Sometimes I think I should just stop eating/taking anything..and let nature take it's course.

I wish you were here in front of me so I could give you a hug. I'm sorry your DH is being so difficult. He should be trying to help you. Get a plastic baggie and put it over that remote. That will make it easy to clean when they get their contaminated hands all over it. This disease is hard enough to deal with by itself but when we don't have our loved ones support it makes it even harder.

Gfresh404 Enthusiast

I feel like giving up too.

My Dr. questions my DX because I'm newly DXed at the age of 54. She said it should have shown up sooner if I really have it. I said I thought I had a soy sensitivity too, because I get all sorts of neuro symptoms if I ingest it. She said "soy can't do that".

My blood work was negative, but biopsy showed flattened villi and a couple of ulcerations.

I asked her for a Hashi's test because I seem to have a lot of symptoms, and she said no. She did agree to testing my TSH level though. I won't find out the results until I go back in 2 months.

My GI doesn't seem to know much about Celiac? She ordered blood tests for vitamin/mineral levels and they weren't too bad at that time. She told me to just not eat gluten and I'd be fine. When I asked about my damage and the Marsh scale she didn't know what I was talking about.

I feel tired, depressed, hopeless. On Satarday night I talked to my son on the phone and he suggested I contact the various treatment centers and see if they could recommend an experienced Dr. in my area. I told my hubby I thought I should try it. On Sunday morning I logged onto the computer to check emails, etc. Hubby came into the room and asked if I had contacted the places yet. I told him I had just logged on and hadn't even made coffee yet. He yelled at me that I wasn't trying to do anything to help myself and that I'm just a whiner..went on and on. :(

I am always vigilant about making sure I'm not consuming even traces of gluten, but my hubby and son still eat it. Neither one is the least bit careful about trying to keep it contained.

I picked up the TV remote and it was covered with bright orange powder from cheese curls they had been eating. When I told them they keep poisoning me they told me I was rediculous.

I feel like crap, and I'm tired. I don't want to eat..in fact I've gotten so I'm afraid to eat.

I'm taking a handful of vitamins/minerals every day and use melatonin to sleep.

Sometimes I think I should just stop eating/taking anything..and let nature take it's course.

I feel ya - definitely get a new Doctor. And I would just try to explain to your Husband and Child how truly sensitive an individual can be to something. Some of my relatives thought I was nuts too when I tried to explain to them about cross-contamination. It's definitely a frustrating conversation because you don't want to be a jerk about it, but at the same time you definitely don't want to get sick. Just try to have patience and consider looking at it from their perspective. Just remember you can only control your actions - you can't control anyone else's. Hang in there, I'm sure things will get better, change is never easy.

Bubba's Mom Enthusiast

Thanks so much for understang..and for your support.

I met with a dietician that usually counsels diabetic patients. She had a lot of mis-information and didn't know the answers to some of my questions. She told me to just eat the gluten free verasions of the foods I had to give up..and Bob's Red Mill was highly recommended.

I explained the 20ppm allowed in gluten-free and how it can add up. Whole foods are best, especially at first.

I told her lots of people have problems with BRM products having cc. I explained to her why it would matter if shampoo and cosmetics contain gluten and she copied the list of those ingredients for her file. I liked her, she was just not very helpful.

I asked her if she knew any Dr.s experienced with treating Celiac, and a friend of hers is one, but isn't covered by my insurance.

I know it was an imposition, but I sent her a note asking her if she could ask her friend if he knows of any other Docs..in the hopes I can find one in my insurance plan.

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.