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

Help! Is It Celiac, Anyone Like Me?


Bedbug

Recommended Posts

Bedbug Newbie

I've been diagnosed with fibromyalgia, chronic fatigue syndrome, severe depression, generalized anxiety, sleep disorder, early onset menopause, IBS, and the list goes on and on......AHHHHHH!

I started my decline into darkness 7 years ago....going from working part time, being a fun mom and wife, and being active with friends and hobbies to becoming a reclusive, nonfunction, friendless, apathetic, sad, TV watching hermit. I now rarely leave my bed. IS THERE ANYONE WHO IS SO DEPRESSED AND FEELING GENERALLY SO FATIGUED THEY ARE ACTUALLY STAY IN BED LIKE ME ... OR I AM I JUST EXTRA LAZY? I feel like the worst wife and mom in the world. The guilt makes it all worse. I wonder if my personality is defective and I don't contain whatever is needed to "power through". AM I ALONE?

My son has Celiac Disease, nephew with Aspergers, mother has addiction and anxiety problems.

I've had all kinds of tests --- nothing. Dr.s just load me up on all kinds of meds (7 right now) and say "come back in 3 months".

Can anyone on this site give me helpful advice?

Is there anyone who has had, or knows someone with a similar experience?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I've been diagnosed with fibromyalgia, chronic fatigue syndrome, severe depression, generalized anxiety, sleep disorder, early onset menopause, IBS, and the list goes on and on......AHHHHHH!

I started my decline into darkness 7 years ago....going from working part time, being a fun mom and wife, and being active with friends and hobbies to becoming a reclusive, nonfunction, friendless, apathetic, sad, TV watching hermit. I now rarely leave my bed. IS THERE ANYONE WHO IS SO DEPRESSED AND FEELING GENERALLY SO FATIGUED THEY ARE ACTUALLY STAY IN BED LIKE ME ... OR I AM I JUST EXTRA LAZY? I feel like the worst wife and mom in the world. The guilt makes it all worse. I wonder if my personality is defective and I don't contain whatever is needed to "power through". AM I ALONE?

My son has Celiac Disease, nephew with Aspergers, mother has addiction and anxiety problems.

I've had all kinds of tests --- nothing. Dr.s just load me up on all kinds of meds (7 right now) and say "come back in 3 months".

Can anyone on this site give me helpful advice?

Is there anyone who has had, or knows someone with a similar experience?

Your first line says it all - these are all symptoms of gluten intolerance/celiac disease. You don't mention if you have ever been tested for celiac, but if you haven't you should be. Your son's celiac disease came via genes from either his mother or father (or both). That means that it is quite logical for one of you to express the disease. If you have been tested and the results were negative, you should still give the gluten free diet a trial - you may be amazed at the improvement in your symptoms, including the depression, which is probably not a clinical depression but rather just another gluten manifestation. You know how to do the diet because your son must do it, so get started right away and feel BETTER.

Celiac testing is not entirely reliable, and many people have gluten intolerance which does not meet the criteria of celiac disease (i.e., a certain level of antibodies in the blood and damage to the villi in the small intestine) but nevertheless suffer most of the same symptoms as those with celiac. However, doctors as a group seem loath to tell these people to stop eating gluten, so that is why I am telling you - get rid of that substance and you may well be amazed what a difference it will make to your life. Not necessarily tomorrow, but after you have had time to heal. You may well find you can get rid of all those meds which could be making you feel worse rather that better if gluten is the problem.

Good luck and stay in touch and let us know how you are doing.

ravenwoodglass Mentor

Your not alone. Your issues sound so very familiar to me. I had them all and then some. I also have celiac children who were diagnosed 6 months after I finally was. Interestingly I was close to death at diagnosis but never showed positive on blood work (this delayed my diagnosis for many painful years) both of my children did show up on blood work with much less impact than I.

I think you are in the right place, ask any questions you need to and when you are done with all celiac related testing do the diet and see if it helps. I bet you will have your life back within a few months.

Skylark Collaborator

You are not alone. IBS, depression and anxiety (which later turned into bipolar), chronic fatigue, hypothyroidism and gastritis for me. I was so tired I didn't want to get out of bed some days. Going gluten-free pretty much cleared things up and now I feel so much better.

txplowgirl Enthusiast

Hi Bedbug,

I have fibro, rheumatoid arthritis as well as battled with clinical depression and high anxiety, not to mention a host of other problems too long to mention. Have had this since I was 8 years old. Dr's kept throwing meds at me that never seemed to work.

Did you know that over 75% of patients with fibro have food intolerances? I read that in one of the fibro network periodicles that I get.

That is what led me to gluten because the fibro meds and RA meds do not work for me.

If you are at the point I was, I was at the end of my rope, I didn't have the insurance and I felt like I was dying. I said to hell with the tests because of the chances of the tests being negative and went gluten free.

Now, you can get tested for celiac, but keep in mind that they are not a sure thing. You can test negative to the blood test and biopsy but still have a gluten sensitivity and it can cause the problems youa are having just as much.

My depression, anxiety and IBS are gone. I only have bouts of depression, IBS, and anxiety when I ingest the least amount of gluten, dairy or soy. The pain, fatigue and swelling have eased up alot since I quit eating the nightshade vegetables. (tomatoes, potatoes, all bell peppers and eggplant.) Do you drink a lot of diet drinks? The aspertame is also a no no for fibro sufferers. Causes fatigue. It took me a year to get me to where I am now.

I say go for it, and if you would like to talk with me just let me know. I'll help you all I can.

Vicky

gf-soph Apprentice

Just to second the other posters - give up the gluten!! There is a VERY real chance that it is a significant part of your problems. Gluten can directly cause all of the problems you have mentioned. Many doctors are ignorant of what gluten can do to you, but the combination of your son having celiac and your symptoms means you should definitely try for at least a few months.

Having a celiac son is an advantage at this point as you probably have a good idea what you need to do, and depending on his age he might be able to help you out to start with.

I also think there is a real value to keeping a journal of your symptoms and food - daily is good if you are up to it, but even writing down thorough lists every week or so can be a really good way of keeping track. I think it is really easy to miss the little improvements that happen - my first symptoms to go when I stopped eating gluten were mouth ulcers and foot cramps. They are also something that comes back when I am glutened. I don't think I would have realised this without having my symptom entries to look at.

Hope you start to feel better soon!

  • 2 months later...
VegasGuy10 Newbie

I've been diagnosed with fibromyalgia, chronic fatigue syndrome, severe depression, generalized anxiety, sleep disorder, early onset menopause, IBS, and the list goes on and on......AHHHHHH!

I started my decline into darkness 7 years ago....going from working part time, being a fun mom and wife, and being active with friends and hobbies to becoming a reclusive, nonfunction, friendless, apathetic, sad, TV watching hermit. I now rarely leave my bed. IS THERE ANYONE WHO IS SO DEPRESSED AND FEELING GENERALLY SO FATIGUED THEY ARE ACTUALLY STAY IN BED LIKE ME ... OR I AM I JUST EXTRA LAZY? I feel like the worst wife and mom in the world. The guilt makes it all worse. I wonder if my personality is defective and I don't contain whatever is needed to "power through". AM I ALONE?

My son has Celiac Disease, nephew with Aspergers, mother has addiction and anxiety problems.

I've had all kinds of tests --- nothing. Dr.s just load me up on all kinds of meds (7 right now) and say "come back in 3 months".

Can anyone on this site give me helpful advice?

Is there anyone who has had, or knows someone with a similar experience?

If you are not already seeing a Naturopath, I suggest you consider it.


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.

  • 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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.