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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748

    Miyasato
    Newest Member
    Miyasato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • 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.