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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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    • wellthatsfun
      heaps of hope!

      By wellthatsfun · Posted

      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Positive biopsy

      By trents · Posted

      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
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