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

Does It Ever Feel Like Too Much?

beelzebubble

By beelzebubble
in Coping with Celiac Disease

Recommended Posts

hadafish Newbie
hadafish
Posted

Thanks for all your stories. This morning it was just what I needed - to know that I am not alone. I have gluten sensitivity, casein sensitivity, fibromyalgia, myofascial pain syndrome, asthma, scoliosis, degenerative disc disease and numerous other spine problems, arthritis and almost constant joint pain knee, hip and both feet in spite of beinfg gluten free for over a year now. However, it is important to add that I have had hardly any migraines, very little heartburn (except for mistakes) and less anxiety, which is not to say that it is not still an issure for me. I thnk I am becoming more eccentric since my diagnosis, or just getting a bit wierd. The only food I can eat is the food I prepare. I am tired a lot of the time and sometimes I am very sad about the loss of my health and mostly of my independence - not working currently. Just taking care of myself and the household is about what I can handle. I do, however, feel very thankful for many things and especially that I know I have gs/cs. The help from this and other similiar boards is huge. I find that I often show the "good sport" syndrome. A friend will ask how I am doing and even though I have a lot of pain I say "fine". Later, I wonder why my friend does not understand the depth of my difficulties and then I remember I have not revealed the truth. I think it is hard to determine which is better, to say I am fine on the hope that it will become real or I am in pain so that friends will understand. Mostly, I don't want people to know the extent of my problems and that is what is so great about being able to come here. Thanks to all. Jan

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

I needed this today, too. I get hurt when my "friends" make Sunday dinner dates at Pizza Hut, then tell me that I'm not being sociable when I don't go. I get angry when I read the soup labels in the grocery store, they have chicken, wheat, or rice in them, none of which I can have. I struggle to eat my burger wrapped in wax paper while whoever I'm having lunch with is complaining about the buns being stale or hard. Right now, all I want is a bowl of cornflakes. All of the corn flakes I have found use malt flavoring, so I can't eat them. I don't mind when my family and friends eat bread and pasta, it does not bother me. It is the plain, "grown-up" cereals that I miss. And getting people to understand is next to impossible, unless they have the same problem.

plantime Contributor
plantime
Posted

Food isn't my only issue. When I was 12, I was diagnosed via blood test and xrays with Rheumatoid arthritis. Now I am 40, and the Rheumatoid factor was not in my blood, but the osteoarthritis factor was. It leads me to believe that I have both, since I do have symptoms of both. My doctor says no, it is impossible to have both. Is it really? The treatments are not exactly the same, except for pain management. One is an autoimmune problem, the other is a wear-and-tear problem. One is treated with immune suppressants, the other with anti-inflammatory stuff. If I use chondroitin and glucosamine, one joint starts feeling better, but others become so badly inflamed it is unreal. Now I have been formally diagnosed with celiac disease, which at least explains the pain in my gut. With all of the food allergies that I have, and all of this other, I feel like my body hates me. I do the best I can do to take care of myself, and this is what I get in return? Aches, pains, swollen joints, can't eat what I want? Sometimes I wonder why I bother with sticking to the gluten-free diet. Give me real Oreos and Cornflakes!

tarnalberry Community Regular
tarnalberry
Posted

There are a few makers of corn flakes that are gluten-free - check out the health food stores. In fact, I like Nature's Path corn flakes better than the standard Kellogs. There's another company (I forget which one, but I saw them at Wild Oats) that makes gluten-free corn flakes as well. And Erewon's Rice Crisps with freeze dried berries are good too (not too sweet... I hate really sweet cereals).

plantime Contributor
plantime
Posted

Thank you, Tiffany! I will keep looking until I find them! Maybe if I ask at my favorite whole foods store, they could order some in. My husband asked me when I was going to my store again, and would I please go on his day off, he would like to see my store. It makes it easier to handle, knowing that my hubby isn't mad at me for driving 40 miles one way once a month just to buy $20 of groceries!

tarnalberry Community Regular
tarnalberry
Posted

I almost forgot - depending on where in the country you are, you might be able to find Nutty Rice. It's like GrapeNuts, but made with rice. I'm a fan of it. Very crunchy/hearty and definitely not sweet.

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Hi everyone!!!

To answer the original posts...

Going to restaurants is terrifying for me. I hate eating out, and it makes me sad, because a) it used to be fun B) everyone I know wants to go...and I can only think of the holes in my intestinal walls from all the cross contamination.

Sometimes it's hard to explain to the individuals who are hearing the Celiac story for the first time--but I try to remain optimistic, because most of the staff members have learned a great deal--I'm still working on one. Patience has always been a challenge for me.

Life is still positive...I just tried Envirokids cereal and am AMAZED at how much it tastes like Gluten cereal! And, it has CHOCOLATE! WOO HOO! :o:D

That makes my day :)

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      320

      Terrible Neurological Symptoms

      @HectorConvector, Step off the gas. I'm in the U. S. That was what my doctor told me thirty years ago. Things may have changed since then. Things are different on the other side of the pond. Here we go by mg/dl. The smaller incremental changes are more noticeable using mg/dl. Also, I adopted a Ketogenic diet. Ketogenic diets don't spike...
    2. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      16

      Diagnosed Marsh stage 3C in January 2026

      @knitty kitty Holy smokes, that Life Extension B-Complex is burning me up. My multi-vitamin already has 25mg of Niacin. The b-complex adds another 100mg on top of that. My face, neck, and ears look like the Cardinal I use for my profile pic. I have been on the b-complex for 10-days now and it seems to get a bit worse with each passing day. I think I...
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      320

      Terrible Neurological Symptoms

      Evidence from normoglycaemic studies shows that healthy people peak at ~1 hour, and they then return to baseline in 2–3 hours, not 1. CGM shows normal post-meal rises even in metabolically healthy subjects. Clinical tests use the 2-hour value to judge normal glucose clearance. Therefore the 1-hour-back-to-fasting claim contradicts both physiology and clinical d...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      320

      Terrible Neurological Symptoms

      I'm not sure what you're referring to as "normal" here - and is this something your doctor has mentioned (in bold)? As that isn't what any study or official information says. According to diabetes UK and the British Heart Foundation, normal fasting blood sugar is 4.9-5.4mmol/L. Normal by 2 hours from the start of a meal is anywhere below 7.8mmol/L. Random...
    5. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      320

      Terrible Neurological Symptoms

      My skin biopsy and MRI scan shows no signs of any type of nerve damage. Nothing consistent with demylination or peripheral nerve damage. On the contrary, the nerve function from the skin biopsy proved better than normal. I don't get any pins and needles or have any loss of nerve function. It's pain only. Thiamin I take is 100mg a day in tablet. I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,590
    • Most Online (within 30 mins)
      7,748
    Danny Mc
    Newest Member
    Danny Mc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Step off the gas. I'm in the U. S.  That was what my doctor told me thirty years ago.  Things may have changed since then.  Things are different on the other side of the pond.  Here we go by mg/dl.  The smaller incremental changes are more noticeable using mg/dl.   Also, I adopted a Ketogenic diet.  Ketogenic diets don't spike blood glucose as much, and therefore return to fasting levels sooner.  My own experience is my postprandial blood glucose level returned to fasting levels an hour after the end of a meal on a Ketogenic diet.  I was asking if the thiamine you take is thiamine hydrochloride or Benfotiamine or Thiamine TTFD.  Thiamine Mononitrate is not well absorbed nor utilized by the body.  I learned that amounts larger than 100 mgs of thiamine hydrochloride needs to be taken in thiamine deficiency.   500mgs thiamine hydrochloride is recommended by the World Health Organization for several days and look for health improvement.  Thiamine is safe and nontoxic even in higher amounts. When thiamine is taken in high doses, there's a big change in energy availability, especially in the brain, where pain is registered.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function.  Thiamine has analgesic properties.   I learned about high dose thiamine from Dr. Derek Lonsdale and Dr. Chandler Marrs through their website hormonesmatter.com.  I have taken high dose thiamine to correct my deficiency about fifteen years ago.  I could feel myself dying, I was so sick and in pain.  I was grasping at straws.  No harm, no foul, just to try it and see, right?  I tried it and that made all the difference.  High dose thiamine made astounding health improvements within a very short period of time for me.  I wonder if 500 mg of thiamine hydrochloride would have the same effect on you.
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      @knitty kitty Holy smokes, that Life Extension B-Complex is burning me up.  My multi-vitamin already has 25mg of Niacin.  The b-complex adds another 100mg on top of that.  My face, neck, and ears look like the Cardinal I use for my profile pic.  I have been on the b-complex for 10-days now and it seems to get a bit worse with each passing day.  I think I am going to drop down to taking 1/2 of the serving size.  In other words, 1 capsule instead of 2.  Hopefully dropping to one does the trick. Have you noticed any side effects from that B-complex?  It is WAY over the daily recommended values: Thanks for your time, Known1
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Evidence from normoglycaemic studies shows that healthy people peak at ~1 hour, and they then return to baseline in 2–3 hours, not 1. CGM shows normal post-meal rises even in metabolically healthy subjects. Clinical tests use the 2-hour value to judge normal glucose clearance. Therefore the 1-hour-back-to-fasting claim contradicts both physiology and clinical diagnostic standards.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I'm not sure what you're referring to as "normal" here - and is this something your doctor has mentioned (in bold)? As that isn't what any study or official information says. According to diabetes UK and the British Heart Foundation, normal fasting blood sugar is 4.9-5.4mmol/L. Normal by 2 hours from the start of a meal is anywhere below 7.8mmol/L. Random (more than 2 hours after a meal) should be below 5.6mmol/L.  Not in any study of normoglyceamic individuals does blood sugar go down to less than 5.4mmol/L one hour from the start of a meal, and I don't see such numbers being considered a limit for one hour post prandial in any official definition of normal blood sugar ranges anywhere. It is basically impossible even for the most metabolically healthy individual to have a blood sugar level anything like a fasting number 1 hour only after eating a high carb meal. This is also why medical standards use the 2-hour postprandial value, not 1 hour. Blood sugar normally spikes at about 1 hour after a high carb meal.  For example this study shows that young, healthy normoglycaemic people experience a 1hr peak blood sugar level of about 6.5-7mmol/L before which the 2hr number returns to about 4.7mmol/L, slightly higher than the fasting number of that morning. https://pmc.ncbi.nlm.nih.gov/articles/PMC2769652/?utm_source=chatgpt.com Even a normal person isn't going to be seeing essentially fasting blood sugar numbers after any meal except for one with 0 carbohdrates contents.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      My skin biopsy and MRI scan shows no signs of any type of nerve damage. Nothing consistent with demylination or peripheral nerve damage. On the contrary, the nerve function from the skin biopsy proved better than normal. I don't get any pins and needles or have any loss of nerve function. It's pain only.  Thiamin I take is 100mg a day in tablet. I used to test blood sugar a lot in the past, and it never correlated directly with the nerve pain. It has only correlated with increased exercise and stress. The after eating getting worse thing happens when the blood flow is directed to the stomach for digestion away from the peripheral areas, which is normal, but central sensitization has caused normal sensations to be turned into pain by the brain, according to the latest doctors, hence whey I am being referred to the pain clinic.
×
×
  • 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.