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 Really Need Some Help I Am Scared


mommy2ky

Recommended Posts

mommy2ky Newbie

Hi everyone. I am new here and really need some advice. I will try to make this short. I have been ill for a year after having my son and my thyroid is hypothyroid right now and showing antibodies. I also have Very low iron (ferritin) so I am now on meds for both. I actually started feeling so much better then a year of being scared. MY mom has celiac disease and I did have a blood test but it was negative. My mom went through thyroid problems and a ton of issues before being diagnosed now she is healthy as ever. I have went gluten free to test my body itself because I am desperate to get better. I actually had more gluten then I have had in a long time this week because I was starving and I am also 9 weeks pregnant. It didnt seem to affect me and then yesterday after months of feeling better all my symptoms came back and this is what is happening. I get a burning sensation that runs through my arms and legs mostly, I sweat like I am having hot flashes and feel like I may pass out. I am nauseous and just really unwell. I am not sure if this is my body reacting to the gluten?? I am really worried now and dont know what to do. The only thing I have done different is eat gluten this week and so I am trying to figure out if that maybe was the problem and my body is reacting badly. I am going on the second day of feeling like this. I am scared to do anything because The hot flashes and almost fainting is VEry scarey. I am still not feeling well today. ANy advice or thoughts on this I would really appreciate. I am so lost and dont know what to do. Thank you for reading.


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

Have you talked to your ob/gyn about it? You should let her know what is happening just in case it's pregnancy related. You should also let her know that you may have celiac disease, and that it runs in your family. If you're not eating gluten, or eating very little gluten, at the time of the blood test for celiac, you can get a false negative. There are also a lot of us on here, myself included, that don't have classic celiac, but have gluten intolerance, which is just as miserable to live with if you're not being gluten-free, but in different ways than classic celiac. So, if your body doesn't like gluten, don't eat it. You can figure out the details of whether or not you have classic celiac after your pregnancy. I haven't been pregnant while knowing I had gluten intolerance, so hopefully some of the more experienced women here will give you some advice.

Nancy

mommy2ky Newbie
Have you talked to your ob/gyn about it? You should let her know what is happening just in case it's pregnancy related. You should also let her know that you may have celiac disease, and that it runs in your family. If you're not eating gluten, or eating very little gluten, at the time of the blood test for celiac, you can get a false negative. There are also a lot of us on here, myself included, that don't have classic celiac, but have gluten intolerance, which is just as miserable to live with if you're not being gluten-free, but in different ways than classic celiac. So, if your body doesn't like gluten, don't eat it. You can figure out the details of whether or not you have classic celiac after your pregnancy. I haven't been pregnant while knowing I had gluten intolerance, so hopefully some of the more experienced women here will give you some advice.

Nancy

Thanks for your reply. I would think possibly it is pregnancy but I have been pregnant before and not felt like this. Not only that these symptoms were happening last summer and winter and I wasnt pregnant. I have been told it is so many things and for a while I thought it was my thyroid but the docs kept telling me not thyroid symptoms. I have been feeling a bit better for the past 3 months and now all of a sudden the week I eat more wheat then I have in a long time I am getting the burning through my body, weakness and passing out feeling. I just start to sweat in the face and it is horrible. I really dont know. NOw I have pain in my back that is constant no matter how I sit. My husband says it is just sore muscles but I seem to panic about everything lately.

Jnkmnky Collaborator

Going gluten free is not a medical situation. You can chose to live Gluten free for a variety of reasons just like you can choose to be vegan, vegetarian, low carb, low sodium... There are great gluten free foods out there. No starving, pregnant or not. You said you chose to eat gluten containing foods because you were hungry.... Being gluten free doesn't mean you're hungry. Are you aware of all that you CAN eat on a gluten free diet? Do you shop at Kinnikinnick.com? You're fear may be motivated a lot by the fact that you're pregnant and responsible for your growing baby. It's day two of feeling miserable, right? Call your obgyn and tell her that you'd been gluten free, suspecting gluten intolerance due to your mom's dx, and that you ate gluten and are terriby sick and as a result, scared. Being stressed during pregnancy is NOT good for your baby.

I'd say don't even look for a "proper dx of celiac" at this point. You're pregnant. You felt better being gluten free. That's dx enough that gluten doesn't agree with your body. I'm neg even for Gluten sensitivity. If I went by the current testing, I'd be eating gluten... but you know what??? My body reacts to gluten no matter what the tests say about my body reacting to gluten. My son has celiac disease. I have my whole family on a gluten free diet and no one... not the 11 year old, not the 9 year old, not the almost 8 year old or me are starving. There are great foods out there. What were you eating? What did you feel deprived of? Let us know, and we'll direct you towards some good foods.

  • 2 weeks later...
Carolita Rookie

Hello Mommy2ky,

Hope you are feeling better today. I agree, you should talk to your OB/GYN. All pregancies are different. Your pregnancy is still very recent so I don't recommend making dietary changes that will affect your system. If being gluten free makes you feel better then don't eat gluten. If eating gluten makes you sick it can also remove the nutrients your baby needs to develop. Talk to your OB/GYN and tell her about your dient and celiac. Hope you feel better soon.

Carol :)

Ursa Major Collaborator

I don't want to scare you, but if you have Celiac disease and eat gluten, it can cause a miscarriage. Miscarriages are a recognized symptom of celiac disease. I know, I had eight, because I wasn't diagnosed until I was already 52.

Your symptoms are very much like what I used to experience, especially when pregnant. My advice is to stop eating gluten immediately. Your glutened symptoms could last another week, and hopefully you'll feel much better within a few days.

In order to be diagnosed with celiac disease at this point, you'd have to do a gluten challenge, meaning you would have to eat a lot of gluten for months. That wouldn't be safe for you or your baby. Your only real choice is to go back onto a gluten free diet. Not just wheat free, but gluten free. And you don't need a doctor's permission to do so, it's your choice.

Eating gluten free is healthy, and you can absolutely get all the nutrients you need from that diet. NOBODY needs ANY grains to be healthy. If you want to read an excellent book on the subject, read 'Dangerous Grains', it is a real eye opener.

If you need advice on the diet, you've come to the right place. Ask away, and I'm sure many people will be eager to help and to give you great recipes, even. I am not the one to ask about all that, because I am intolerant to a million things, and my diet is so restricted, that I have to make up my own recipes.

So, don't be scared, stop the gluten, and I'm sure you and the baby will be just fine!

CMCM Rising Star

The human body does NOT need gluten to be healthy. In fact, in my opinion, our bodies were not designed to digest grains and that's why so many people have problems with them.

It would not possibly impact your pregnancy to be gluten free....just be sure to eat healthy vegetables, fruits and protein sources and you'lll be fine. And Ursula is right.....if you do have celiac, and you continue to eat gluten, THAT could endanger your pregnancy.

Just go on a gluten free diet....then see how you feel. The one great thing about celiac disease or even gluten sensitivity is that treating it is so safe and healthy, and involves no drug at all! In this fact, we are lucky to have this instead of other things we might have!

Another thing I've read lately....that when pregnant and also when nursing, it is far better that the mother eats NO gluten, particularly if the baby has inherited one of the celiac/gluten genes!


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



Celiac.com Sponsor (A8-M):



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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,548
    • Most Online (within 30 mins)
      7,748

    KandiWoods
    Newest Member
    KandiWoods
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.