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 Me Before I Litterally Waste Away.


razberrykisses

Recommended Posts

razberrykisses Newbie

I was diagnosed with celiac in march of this year. My mom has it, and i have had 5 pregnancy losses. After i got the test i went 100% gluten free. I have felt sooo much better ect. however, in october i found out i was pregnant again. Since then i have dropped almost 30 lbs. Now that might not be a big deal for some people exept i was at 130 lbs when i got pregnant. I am now 20 weeks pregnant and i feel like i am dieing. My doctor doesnt get it. she keeps telling me to eat suppliments that i cant eat. a nutritionist that told me to eat more bread...umm huh? Gluten free you moron! I am drinking ensure every day, eat meals plus snacks, and nothing is working. She said if i dont gain weight by next visit i have to be hospitalized. I dont know what to do. ANYTHING someone has to say that actually understands my diet limitations would be great.


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

I wish I had a clue, but I don't. If you're strictly gluten-free and you're pregnant, you should most definitely be gaining weight. Just wanted to say good luck and I hope you figure it out.

richard

Janessa Rookie

you could possibly have additional intolerances that could be holding you back. I know that Ensure is almost 100% highly processed corn and soy, not good for you even if you can have them, there is another vitamin drink I use called mix 1 that is more natural. You could try adding more good fat to each meal to up your calories, like olive oil and avocado.

Also there are a lot of natural supplements out there they are just a little harder to find, use what your dr. recommended as a guideline and find one you can have. Googlr Dr Ron for tons of natural gluten free supplements

tarnalberry Community Regular

If you were able to maintain a stead weight *before* the pregnancy, and are able to keep food down and consume enough calories, and haven't changed what you were eating, it's probably not the food. If your OB/midwife hasn't been helpful, FIND ANOTHER ONE. Even if just for a second opinion. And honestly, in that case, I would go with a high risk maternal-fetal specialist.

But do you know if you are getting enough calories?

Are you able to keep everything down?

(Is your prenatal vitamin gluten free?)

It's not uncommon to lose weight in the first trimester, but you're well out of that now, and should be showing some variety of positive gain, even if it's not much.

kareng Grand Master

Many years ago, when I was pregnant, my doctor told me about a patient who wasn't gaining. He had her keep nuts with her & eat them all day. Not sure if that will help. If you live anywhere near a medical school, you might get a second opinion there. Sometimes they are good for "odd" diseases. Good Luck.

razberrykisses Newbie

I have had a bunch of tests to check for other allergies and intollerances. I dont have any, thats why i am just at a loss! I can keep food down, and i am getting my calorie intake. My doctor says it has to do with having celiac disease but i am not sure. I am really wondering if she would refer me to a fetal maternal medicine doc.

StephanieSD Apprentice

I have had a bunch of tests to check for other allergies and intollerances. I dont have any, thats why i am just at a loss! I can keep food down, and i am getting my calorie intake. My doctor says it has to do with having celiac disease but i am not sure. I am really wondering if she would refer me to a fetal maternal medicine doc.

If you're eating healthy, gluten-free meals, then it's not the celiac disease. You really should talk to another doctor and another nutritionist, ones who understand gluten intolerance.


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



Celiac.com Sponsor (A8-M):



laurie1 Newbie

I was diagnosed with celiac in march of this year. My mom has it, and i have had 5 pregnancy losses. After i got the test i went 100% gluten free. I have felt sooo much better ect. however, in october i found out i was pregnant again. Since then i have dropped almost 30 lbs. Now that might not be a big deal for some people exept i was at 130 lbs when i got pregnant. I am now 20 weeks pregnant and i feel like i am dieing. My doctor doesnt get it. she keeps telling me to eat suppliments that i cant eat. a nutritionist that told me to eat more bread...umm huh? Gluten free you moron! I am drinking ensure every day, eat meals plus snacks, and nothing is working. She said if i dont gain weight by next visit i have to be hospitalized. I dont know what to do. ANYTHING someone has to say that actually understands my diet limitations would be great.

Has your Dr. had your thyroid function checked? If not, that might be a good place to start. Thyroid disorders are commonly found alongside celiac disease and would explain your fairly rapid - yet unexplained weight loss. Is weight loss your only symptom?

Laurie Cole, Holistic HHC

tarnalberry Community Regular

I would encourage you get to a new doctor, ASAP.

Janessa Rookie

I hope you don't have any more allergies or intolerances, but just so you know I had a bunch or skin and blood tests for allergies and nothing showed up not even things I knew I was already allergic to like peanuts. My dr. explained the tests had about a 50% accuracy, and I did find I did have reactions (sometimes very strong) to foods which I tested negative.

katinagj Apprentice

I agree with getting checked for thyroid disorders. It is not uncommon at all for them to suddenly appear after getting pregnant or after giving birth. Definitely something to get checked out, hyperthyroidism can cause you to lose a lot of weight with absolutely no explanation. I would also try seeing a different doctor to at least get a second opinion. I wish I could help more.. I really hope that you can get this figured out, you are in my thoughts..

TrillumHunter Enthusiast

I think you should see another doctor. The thyroid check is a good idea.

Have you had an ultrasound yet?

razberrykisses Newbie

I think you should see another doctor. The thyroid check is a good idea.

Have you had an ultrasound yet?

I have had my ultrasound. My little girl is actually measuring a week ahead right now. She is perfect in everyway. I asked my doctor about the thyroid. She said that she wants me to do weekly weight checks and call her with the results. If in 1 month i havent gained 5 pounds or more she is going to consider sending me to maternal fetal medicine. I think i may just look for a doctor who knows what they are talking about.

jackay Enthusiast

Many years ago, when I was pregnant, my doctor told me about a patient who wasn't gaining. He had her keep nuts with her & eat them all day. Not sure if that will help. If you live anywhere near a medical school, you might get a second opinion there. Sometimes they are good for "odd" diseases. Good Luck.

Be sure the nuts are packaged in a gluten free facility.

NicoleAJ Enthusiast

I have had my ultrasound. My little girl is actually measuring a week ahead right now. She is perfect in everyway. I asked my doctor about the thyroid. She said that she wants me to do weekly weight checks and call her with the results. If in 1 month i havent gained 5 pounds or more she is going to consider sending me to maternal fetal medicine. I think i may just look for a doctor who knows what they are talking about.

I would go to a high risk specialist now rather than waiting around for another month. A 30 lb weight loss is significant. It's very good news that your little one is measuring ahead--this probably means that she's getting what she needs but is sucking you totally dry. By 18 weeks pregnant I was still down a 1/2 lb from my pre-pregnancy weight, and I was not vomiting and was getting all of the calories I need (I started at 134 at 5'6")--although the nurse seemed concerned, my doctor said that some women don't really gain weight until the baby starts packing on the pounds. She wasn't concerned since my weight loss was very minor. I'll be 22 weeks tomorrow, and I've now gained 5 lbs in these last few weeks; my little girl is also measuring ahead and is healthy. However, my doctor has been closely monitoring different levels of nutrients to make sure that baby and I have enough. I had a vitamin D deficiency, so she started me on 3,000 IUs of D daily. Then my chronic B12 deficiency started to rear its ugly head, so I'm now taking it sublingually on a daily basis. I also take Rainbow light prentals, which are gluten free and am taking a gluten free version of DHA daily. She'll check my levels again at 28 weeks. Hopefully you'll start packing on the pounds soon, but you should definitely be seeing someone with a little bit more knowledge of fetal health. The good ultrasound is an excellent sign, but there might be something else going on. I agree with everyone else about the thyroid levels. Good luck and keep us posted.

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
      133,334
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    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.