Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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, Not Sure If Celiac Fits


instylemom

Recommended Posts

instylemom Newbie

Hi, I am new to this discussion group. I have been gluten free for about eight months. I did the standard hospital blood test for celiac but it came back low. I think it was an 8 that I scored on the test, however I couldnt get through eating wheat everyday for more than 3 weeks. So my very kind and understanding doctor said there was too much going on and I should stay gluten free.

Well since then Ive wanted to challenge the test but I have symptom questions. Has anyone thats gone back on gluten noticed an empty stomach feeling after eating it? This seems to be the case everytime Ive tried to eat wheat. It doesnt matter how much of a food item I eat it never seems to register as full.

Besides this weird symptom I have experienced terrible constipation with or without gluten. Ive had low potassium, low blood pressure, candida albicans(yeast), very low energy drive and dairy intolerance usually resulting in eczema. I was alos on the SCD diet for the eight months that I was gluten free and I did much better. To complicate things even more im having my fourth baby in June, so im not even sure the test is applicable at this point.

Just wondering if I should re test, or if these symptoms match anyone else's experience. I really appreciate any opinions or help :)

Noelle


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



Celiac.com Sponsor (A8-M):



Electra Enthusiast
Hi, I am new to this discussion group. I have been gluten free for about eight months. I did the standard hospital blood test for celiac but it came back low. I think it was an 8 that I scored on the test, however I couldnt get through eating wheat everyday for more than 3 weeks. So my very kind and understanding doctor said there was too much going on and I should stay gluten free.

Well since then Ive wanted to challenge the test but I have symptom questions. Has anyone thats gone back on gluten noticed an empty stomach feeling after eating it? This seems to be the case everytime Ive tried to eat wheat. It doesnt matter how much of a food item I eat it never seems to register as full.

Besides this weird symptom I have experienced terrible constipation with or without gluten. Ive had low potassium, low blood pressure, candida albicans(yeast), very low energy drive and dairy intolerance usually resulting in eczema. I was alos on the SCD diet for the eight months that I was gluten free and I did much better. To complicate things even more im having my fourth baby in June, so im not even sure the test is applicable at this point.

Just wondering if I should re test, or if these symptoms match anyone else's experience. I really appreciate any opinions or help :)

Noelle

Right before going gluten free I had terrible bouts of starvation. I mean I would eat an entire box of macaroni and cheese and then (I kid you not) 15 minutes later I was having massive hunger pains!! It was horrible. I am also very exhausted. I hear that dairy intolerances are common with celiac disease. I'm not sure about any of the other symptoms, but I'm sure someone else here will be able to give you some info on those.

I'm not sure what you should do but If you feel better when gluten free then It may be best to stay gluten free at least until after the baby is born. After all, you want to make sure that you are as healthy as you can be while you are carrying your little bundle of joy!!

Good Luck!!

instylemom Newbie

Thank you so much for your reply. This really helps to know that someone else knows what Im talking about. I think I know the answer to my questions after typing them out on here. I think you are right about staying gluten free for at least the rest of my pregnancy.

Thank you for your sincerity and caring. I will take the advice seriously

Noelle

Right before going gluten free I had terrible bouts of starvation. I mean I would eat an entire box of macaroni and cheese and then (I kid you not) 15 minutes later I was having massive hunger pains!! It was horrible. I am also very exhausted. I hear that dairy intolerances are common with celiac disease. I'm not sure about any of the other symptoms, but I'm sure someone else here will be able to give you some info on those.

I'm not sure what you should do but If you feel better when gluten free then It may be best to stay gluten free at least until after the baby is born. After all, you want to make sure that you are as healthy as you can be while you are carrying your little bundle of joy!!

Good Luck!!

olalisa Contributor

Welcome, Noelle!

I also had gnawing hunger before my diagnosis. When I accidentally get glutened now, I'll have it again for up to a week. As for the other symptoms, many of yours sound like mine--the low BP, the candida, the dairy intolerance, low energy, anemia and other nutritional deficiencies, the list goes on....

I had some other symptoms that you haven't listed, like serious edema in my legs/ankles and lots of leg and foot cramps, but the symptoms of this disease are SO variable, which is one reason it often goes undiagnosed.

So....if you feel better off of gluten, I'd stay off of it, even without an "official" diagnosis.

Lisa

instylemom Newbie

Hi Lisa,

Thank you for the nice welcome. I have already returned to a gluten free diet due to awful cramping and pain. At least I already know what to do and how to do it :) I cant beleive this was only one days worth of eating gluten and I got such a terrible result. Its nice to know there are others that understand.

Noelle

Welcome, Noelle!

I also had gnawing hunger before my diagnosis. When I accidentally get glutened now, I'll have it again for up to a week. As for the other symptoms, many of yours sound like mine--the low BP, the candida, the dairy intolerance, low energy, anemia and other nutritional deficiencies, the list goes on....

I had some other symptoms that you haven't listed, like serious edema in my legs/ankles and lots of leg and foot cramps, but the symptoms of this disease are SO variable, which is one reason it often goes undiagnosed.

So....if you feel better off of gluten, I'd stay off of it, even without an "official" diagnosis.

Lisa

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,748
    • Most Online (within 30 mins)
      7,748

    Jojo W.
    Newest Member
    Jojo W.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
    • Sandi20
      I really like Thorne!  I've researched thier products.  Thank you so much.
    • trents
      Welcome to the forum, @K6315! Gluten withdrawal typically lasts for a period of a few weeks. But there is a real learning curve involved in actually attaining to a gluten free dietary state. Much more is involved than just cutting out major sources of gluten such as bread and pasta. It's all the places that gluten is hidden in the food supply that is difficult to ferret out, like soy sauce and canned tomato soup, canned chili and canned pork n' beans, some "lite" pancake syrups, potato salad, flavorings, etc., etc. Gluten-containing grain products are hidden through alternate terminology and found in places you would never expect.  There is also "cross contamination" where naturally gluten free foods come into contact with gluten-containing grains during farming, transportation, storage and manufacturing processes. Then there is the issue of "cross reactivity" whereby you may be having gluten-like reaction to food proteins whose structure is similar to gluten. Chief among these are dairy, oats (even gluten-free oats), soy, corn and eggs. I am including this article that you might find helpful:   
×
×
  • Create New...