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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,351
    • Most Online (within 30 mins)
      7,748

    blacksilkroses
    Newest Member
    blacksilkroses
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.