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

I Need A Little Help! Thank You!

brett31em

Recommended Posts

brett31em Rookie
brett31em
Posted

Okay, so I am a 21 year old female college student with no medical problems.

--As a child I had a ton of ear infections and was on antibiotics quite a bit (don't know if this is relevant, but I'm including it anyways).

-- Seven months ago I went off of the birth control pill, which I was on for six months, because a ton of weird things started happening to me: face rash, abdominal bloating and distention, hair falling out, mood swings, cramps, weight gain

--For a few years now, I have had a rash on the inside of my elbow that comes and goes. Sometimes it just looks like eczema, other times it's a bunch of little red bumps that are itchy, but not painful or blistery. It is in a perfect circle. Sometimes a few little bumps show up on my other arm, in the same spot, but not in a perfect circle.

--Ever since gaining the weight on the birth control pill I have been having problems with bloating, gas, and abdominal distention. There doesn't seem to be any rhyme or reason to when it occurs, just about all the time, and worse during my menstrual cycle.

--I have a RAVENOUS appetite. I eat more than my boyfriend! I can eat a bowl of pasta and meatballs and be hungry 1.5 hours later.

--If I let myself get too hungry, my stomach blows up with air.

--I am deficient in Vitamin D per my last physical (the only vitamin he tested)

--I have pretty severe anxiety about school, work, family, etc. Sometimes it just seems irrational.

So I have been on a gluten free diet due to suspicion of Celiacs (by a dietitian) for about two weeks and the bloating/distention seemed to be better for a few days, but now that I am approaching my menstrual cycle, I feel HUGE again. But, my appetite seems to really be under control. Based on all this, what do you guys think? Celiacs? Any other suggestions? Need any more info?

Thank you all SO MUCH.

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Hi there.

It's hard to say. Have you been tested for celiac? You should be able to get a celiac panel based on the vitamin deficiency and the bloating. Keep eating gluten until you get the tests, because if you're gluten-free they'll be negative.

By the way, I had that perfect circle rash you describe on the inside of my elbow many years back. It's really weird, huh? I was afraid I had Lyme disease but my doctor just diagnosed it as atopic dermatitis and a little cortisol cleared it up.

ravenwoodglass Mentor
ravenwoodglass
Posted

The rashes you are describing on the inside of your elbows sound like DH. That would be a common place for it. I would get it there and also on the backs of my knees for years. A home test for DH is to get some topical iodine solution, like the stuff you would put on a wound, put it on your skin near where you usually get the rash and cover it with a bandaid. If it is DH you will develop a the rash within a day or two or possibly sooner. You could also go to a derm and ask them to biopsy the skin next to a rash while it is active. Specifically ask them to look for DH as a special test needs to done in the lab. A diagnosis of DH is a diagnosis of celiac.

You symptoms are also suggestive of celiac. You need to be on a full gluten diet for testing so if you are going to have tests done make sure you are still eating gluten. If you have been gluten free you need to go back to gluten for 2 to 3 months for any chance of a correct blood test or biopsy. Even then the tests can be a false negative so after you are done with testing give the diet a good strict try for a couple of months to see if it helps.

brett31em Rookie
brett31em
Posted
  • Author

Thank you for your replies! From my research, I guess I am just wondering what the tests really will tell me...I've been reading all about false negatives, not being certain, etc.

mushroom Proficient
mushroom
Posted

Yes, there is about a 20% false negative rate on the testing, but you won't know until you try. It sounds like a test result would be important to you, so you should probably stay on gluten and get it done. If it is negative, then you can try the diet and see if it works for you.

P.S. I have not heard of false negatives on the DH testing if it is done correctly, i.e., biopsy immediately adjacent to the lesion.

brett31em Rookie
brett31em
Posted
  • Author

Thanks again everyone! Is DH ever kind of mild? In other words, yeah, it's pretty itchy, but I don't have oozing blisters like some people describe..

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks again everyone! Is DH ever kind of mild? In other words, yeah, it's pretty itchy, but I don't have oozing blisters like some people describe..

Yes, it can even vary in intensity for the same person over time. Mine was really bad and covered large areas as a child but in later years it was often much milder. Now when I get glutened I only get one or two little bumps.

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

Celiac.com Sponsor (A8-M):


brett31em Rookie
brett31em
Posted
  • Author

Lately, I have been getting sick a lot too. What about candida?

ravenwoodglass Mentor
ravenwoodglass
Posted

Lately, I have been getting sick a lot too. What about candida?

You have only been on the diet a couple of weeks and it does take some time to heal. What are you eating? You should be eating a diet with as much unprocessed food as is possible and you need to make sure you have done things like getting a new toaster, replacing colanders, strainers and wooden utensils. You need your own dedicated condiments, nut butters etc. Give the gluten-free diet a bit more time before you start to worry about other issues.

  • 2 weeks later...
brett31em Rookie
brett31em
Posted
  • Author

Hey guys...so just a question...before being diagnosed, did you find that after you ate, say, a dish of pasta, it didn't satisfy you at all and you were starving 1.5 hours later?

ravenwoodglass Mentor
ravenwoodglass
Posted

Hey guys...so just a question...before being diagnosed, did you find that after you ate, say, a dish of pasta, it didn't satisfy you at all and you were starving 1.5 hours later?

Early on in the disease course yes. If your body is not absorbing nutrients it can try to counter that by signaling you that you want more food.

  • 5 weeks later...
brett31em Rookie
brett31em
Posted
  • Author

Early on in the disease course yes. If your body is not absorbing nutrients it can try to counter that by signaling you that you want more food.

So there is definitely digestive improvement, but there is something else going on with this water retention. I had an abdominal and pelvic sonogram and everything looks normal! Doctor doesn't think it's necessary to test vitamin levels/reproductive hormones...even though my last one said I was low in Vitamin D. I think this is absolute crazyness. What are some possible causes for severe water retention throughout (not just during period) the menstrual cycle?

kareng Grand Master
kareng
Posted

So there is definitely digestive improvement, but there is something else going on with this water retention. I had an abdominal and pelvic sonogram and everything looks normal! Doctor doesn't think it's necessary to test vitamin levels/reproductive hormones...even though my last one said I was low in Vitamin D. I think this is absolute crazyness. What are some possible causes for severe water retention throughout (not just during period) the menstrual cycle?

Which doc did you go to? Ob/ gyn or regular? Go to the other. Get tested for iron, b12 & d. Salt can cause water retention if that is what it really is. Diet & regular sodas and processed stuff have a lot of sodium.

Have you tried not eating dairy for a couple of days? If you have a hard time digesting, it can make you bloated.

ravenwoodglass Mentor
ravenwoodglass
Posted

So there is definitely digestive improvement, but there is something else going on with this water retention. I had an abdominal and pelvic sonogram and everything looks normal! Doctor doesn't think it's necessary to test vitamin levels/reproductive hormones...even though my last one said I was low in Vitamin D. I think this is absolute crazyness. What are some possible causes for severe water retention throughout (not just during period) the menstrual cycle?

I had pretty severe water retention and full body edema. In my case it was due to celiac impacting my kidney function. I instictively stayed away from salt, I had one package that I had for over 5 years that moved with me through 3 different states. LOL. So we know it wasn't due to that. Doctors couldn't really tell by looking at me because I am a very small person and it wasn't localized. It did resolve pretty quickly gluten free, I even lost a full shoe size, the only problem I have now is that when I get glutened my kidneys still bleed a bit leading to my having a bit of blood show up in my urine.

As to your doctor not testing for vitamin levels, you do have the option of consulting another doctor. My OB/GYN was much more helpful than my regular doctor but you might want to find another GP or Internist.

brett31em Rookie
brett31em
Posted
  • Author

My new OBGYN seems to think that my hormones have changed as a result of gaining ten pounds on the BCP, and that it is not related to the Celiac...sound plausible?

GFinDC Veteran
GFinDC
Posted

Hey guys...so just a question...before being diagnosed, did you find that after you ate, say, a dish of pasta, it didn't satisfy you at all and you were starving 1.5 hours later?

I can tell you that I ate a lot more food before going gluten-free, and didn't gain weight. Now I eat less and put on weight. Sort of like a normal person now.

You can get some liquid B-12 and try that, and some Vit D in gel capsules might help too. It's a good idea to get testing first so you can monitor your vitamin levels as you go.

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
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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.