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Been Dealing With This For Almost 6 Years

kittykuddle

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kittykuddle Newbie
kittykuddle
Posted

Hello everyone! I am new here and thought I would share my story as I was shocked to actually find some other people who share the same symptoms as i do. So I guess I am not crazy! LOL Well it all started when I was pregnant with my daughter 5 1/2 years ago. I found that while I was pregnant, my body would go up and down in weight daily (about 10 to 12 pounds daily). The doctors were worried about the baby because of It, even though my child was fine. After I delievered my daughter I was hoping these weird weight fluctuations would stop,but of course they didn't. Some days I can go up 12 pounds! I have good days, where I can actually fit into my clothes. But more often then not I have bad days where my clothes don't fit at all. One day I can fit into my clothes and the next day I CANT! It Is sooo frustrating! I have measured my thighs and found one day from the next there can be a 1 1/2 inch diffrence! I have been to the doctors about this and have been laughed at! I have went to specialists and been told that It's all in my head!! I was told It Is not possible to gain that much weight daily!! My bloodwork has come back time and time again perfect. So I am not sure what Is wrong with me. I talked to a Natural doctor and was told that my symptoms sound like celiac disease, so thats why I am here.She also told me I might have Yeast Overgrowth (or something like that). Do you guys think with my symptoms and problems that Celiac disease might be what I have? Please let me know as I am tired of dealing with It! Thanks!

Michelle

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KJ11DU Newbie
KJ11DU
Posted

hey michelle! don't worry you're not alone. i too can gain up too about 8lbs a day. i haven't measured anywhere other than my stomach due to the fact that that is where i "swell" become distended after i eat anything. this has been going on everyday for over 3 years. i too have been told all of this is in my head. right! i have just recently found a GI doc. that is thinking i may have celiac disease and we're in the process of running test. after all i've been through i will welcome a gluten free diet with open arms if that is what it takes for my symptoms to go away.

Kerry

kittykuddle Newbie
kittykuddle
Posted
  • Author
hey michelle! don't worry you're not alone. i too can gain up too about 8lbs a day. i haven't measured anywhere other than my stomach due to the fact that that is where i "swell" become distended after i eat anything. this has been going on everyday for over 3 years. i too have been told all of this is in my head. right! i have just recently found a GI doc. that is thinking i may have celiac disease and we're in the process of running test. after all i've been through i will welcome a gluten free diet with open arms if that is what it takes for my symptoms to go away.

Kerry

Thanks for the reply! I hate having to deal with this daily. Yes my stomach swell's as well. People actually thought I was pregnant at times. Isn't It crap that doctors who we think we can trust will laugh In our faces and tell us "It's all In our heads" I have been following a gluten free diet for about 2 weeks now and I feel a little better, but I still seem to swell up a little still. I guess I will have to give It more time to see what happens. I really think that this Is what I have. I know I have food Intolerances as I only feel bad when I eat. The weird thing Is, Is that I tend to swell up even after drinking water. I find that very weird. Thanks again kerry,

Michelle

zansu Rookie
zansu
Posted

i'm another. I was having 7-10 lbs of difference between morning and evening before I went gluten-free.

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    • 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.
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