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

Please, Help...

Byte Me

Recommended Posts

Byte Me Apprentice
Byte Me
Posted

Hi all,

It's been a long time since I was last here. You all were so very helpful then, and I'm hoping someone can help me now.

I've been gluten-free for nearly 3 years now, I think. I've backslid a few times, and paid for it dearly. Won't go there again!

Lately though, it seems like *everything* I eat except watermelon and berries and frozen veggies is making me sick(nauseated, headaches, acid reflux). I am having what I believe is "dumping syndrome" very frequently...to the point where I almost can't eat at all on work days, not before or during work anyway, I have to wait until after I get home. I've lost 4 jean sizes in the last month/5 weeks. I've had headaches nearly every day for about 7 weeks. My stomach and intestines HURT. Sort of a constant ache, until I take vitamins (positively gluten-free) or eat something other than the watermelon and berries, then it is very painful. Especially B vitamins, I can feel that Niacin hit a spot in my stomach that burns like the fires of hell, and I want to pass out it is so bad. So I've been neglecting the vitamins for way too long now...a good 6/7 months.

I know I can't live off of only fruit. Milk is definitely out, anything dairy is, even yogurt :( I can't take ibuprofen or naproxen sodium anymore, or I bloat and hurt something awful. I can handle acetaminophen, but it doesn't really help the headaches and body aches.

I have run out of options as far as doctors go. No health insurance, and I don't really trust that they will do anything more than throw another useless prescription pill at me anyway.

I am lost as to what to do next. I am depressed again, that is the worst part, because going gluten-free relieved nearly a decade of clinical depression. My thinking has become cloudy again like it was before I was gluten-free. I have checked and double-checked all cosmetics, shampoo, detergents, etc. Nothing with any trace of gluten.

If anyone has any suggestions on what I could try on my own...foods? Alternative medicines? Anything really, I will be so grateful.

~ Jenn

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You really need to see a doctor, I know you don't want to hear that but that is what needs to be done. Check and see if you qualify for medicaid, you won't know unless you check. You could also look for a clinic in your area that has a sliding fee scale. Another option is to head to the ER when you are having a severe attack. The extreme weight loss and the degree of pain you are in are very worrisome. You could have any of a number of things going on and if you are positive that this is not gluten related and there is no way that you are getting glutened either through CC at home or at work you need to get checked out.

FMcGee Explorer
FMcGee
Posted

I second ravenwoodglass - go find a doctor. Medicaid, ER - both good suggestions. Hopefully we'll get the healthcare system worked out in this country so people don't have to suffer. But anyway. There's no way anyone on the internet who hasn't actually seen you, and who may or may not have medical knowledge, can substantially help you from here, much as we all want to. This is serious, and it's only going to get worse. It could be as simple to fix as an intestinal parasite you picked up, but you can't know that until you get looked at. I'll keep my fingers crossed for you. Keep us posted.

Foxfire62 Newbie
Foxfire62
Posted
Hi all,

It's been a long time since I was last here. You all were so very helpful then, and I'm hoping someone can help me now.

I've been gluten-free for nearly 3 years now, I think. I've backslid a few times, and paid for it dearly. Won't go there again!

Lately though, it seems like *everything* I eat except watermelon and berries and frozen veggies is making me sick(nauseated, headaches, acid reflux). I am having what I believe is "dumping syndrome" very frequently...to the point where I almost can't eat at all on work days, not before or during work anyway, I have to wait until after I get home. I've lost 4 jean sizes in the last month/5 weeks. I've had headaches nearly every day for about 7 weeks. My stomach and intestines HURT. Sort of a constant ache, until I take vitamins (positively gluten-free) or eat something other than the watermelon and berries, then it is very painful. Especially B vitamins, I can feel that Niacin hit a spot in my stomach that burns like the fires of hell, and I want to pass out it is so bad. So I've been neglecting the vitamins for way too long now...a good 6/7 months.

I know I can't live off of only fruit. Milk is definitely out, anything dairy is, even yogurt :( I can't take ibuprofen or naproxen sodium anymore, or I bloat and hurt something awful. I can handle acetaminophen, but it doesn't really help the headaches and body aches.

I have run out of options as far as doctors go. No health insurance, and I don't really trust that they will do anything more than throw another useless prescription pill at me anyway.

I am lost as to what to do next. I am depressed again, that is the worst part, because going gluten-free relieved nearly a decade of clinical depression. My thinking has become cloudy again like it was before I was gluten-free. I have checked and double-checked all cosmetics, shampoo, detergents, etc. Nothing with any trace of gluten.

If anyone has any suggestions on what I could try on my own...foods? Alternative medicines? Anything really, I will be so grateful.

~ Jenn

How old are you? I've been going through fullness feeling too, and my new GI thinks I've gotten glutened. Right now, I feel full too, and it's ever since I started a medication (progesterone) that I've called on and confirmed had no gluten (but they always give a disclaimer). When I didn't eat because of full feeling (was pretty constipated, turned out), I totally put my body out of whack in addition to losing over 12 lbs. I've become hypoglycemic, and now I'm taking progesterone replacement to help even out my hormones. My nutritionist also said my serotonin levels could be low. She tried to put me on Zoloft, but I had a jittery reaction. Don't know how I can get my serotonin levels up to par without anti-depressants.

I asked about your age because of potential hormones being out of whack, like possibly with me. You may also have an ulcer. Did you consider getting scoped again? I know you're worried about insurance, but isn't it worth it to pay for your health as opposed to feeling as bad as you do?

I'd definitely go back, but not for more meds...to get scoped again and see if there's something else going on or if this is a gluten reaction that you are unaware of.

Please take care of yourself!!! I know how it feels to feel so bad and not understand what's going on!!! You're suffering, and it's not worth it! Take charge of your health!!!

Ms Jan Rookie
Ms Jan
Posted

Agree with what everyone has said. It sounds so serious, you better get checked.

But while doing so - or if the testing takes time - you might find it helpful to look into the SC intro diet (Specific Carbohydrate) or part of it, since it's aimed exactly at healing the GI system. You can find info on the thread in this forum or on the www.pecanbread.com or scdiet.org, or on the official 'breaking the vicious cycle' site. Even if you don't want to follow the diet, you might be able to pick up some useful tips for foods you can digest right here and now, particularly things like the basic chicken soup is something most guts should be able to ingest.

Good luck!

Byte Me Apprentice
Byte Me
Posted
  • Author

Thank you very much to everyone who has responded, I truly appreciate you.

Unfortunately I do not qualify for Medicaid; in my state, to qualify as an adult, your income must be somewhere around $100/month. Took them less than a week to shoot me down on that one.

I am going to do my best to try and scrape up enough to see a doctor, or maybe to the ER and insist they do something rather than turn me away again.

I will also check into the SCD forum and try some things there.

Foxfire: I am in my mid-30's. I suspect premature menopause, but I was laughed at when requesting a blood test to see.

To AliB: I tried to respond to the message you sent, but got an error that I was not allowed to send (something along those lines). I would like to thank you also, you were very helpful.

Thanks again to all and I will post updates when I am able so that maybe I can help someone else who may be having similar issues.

~ Jenn

purplelion Newbie
purplelion
Posted

Hi Byte Me, I have found doctors to be a waste of time and money. I have had doctors humiliate me when I was seeking their help to get well again. The only true understanding and help I have received in more than 30 years has been from a woman Natropath. She does the VegaTest for foods, chemicals, additives and lots more, also how your organs are coping. I get a read out each time I see her and so I can judge for myself how I am slowly getting better. I also take food, that I suspect to her and she puts it on the vega machine, conferming my suspicions. It seems like a domino effect to me. I had no idea how much of what I was eating was affecting my health. I remove gluten and dairy /casin and also find soy / maize was also making me ill. You have to be like a detective and you are your client <_< search for clues, be observant and then nail the offender for life B)

What doesn't kill us will make us stronger and wiser to perhaps help others :)

Hope this helps,

purplelion

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 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.