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

No Symptoms


HeatherCarter

Recommended Posts

HeatherCarter Newbie

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?


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



Celiac.com Sponsor (A8-M):



zero Newbie

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?

I never had a reaction to gluten before my diagnosis so naturally I thought it was wrong. After going gluten free for a few weeks I started having reactions to accidental glutening. I also gained back 6 pounds. It takes time to adjust to a new diet and basically a new life style. Out of curiosity, how were you tested?

T.H. Community Regular

Yeah, I definitely did, although looking back, there WERE symptoms, just not gut ones. Vitamin deficiencies caused me to get sick more often, get well more slowly, and I had soft tissue stuff like carpal tunnel. My father had his hips and spine destroyed and early arthritis from lack of nutrients. On top of that, you're immuno-compromised whenever you have gluten, so you can get some nasty diseases that you might not usually get. That happened to me, as well.

I was diagnosed because of a cough! Never had gut issues in my life. After going gluten free, felt very hungry, just like you said - a number of people here have experienced that. And man, it is crummy, yuck. Seems to last from a few weeks to a couple months. When you're gut has healed, then you will be getting all the nutrients you're actually eating, and the calories, and that seems to make the hunger go away.

Also, a recent study found no relationship between how badly you feel eating gluten vs. the damage it's doing. People who feel almost no symptoms can get severe intestinal damage. :(

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?

Kelly&Mom Rookie

I've had symptoms on and off pretty much since about 6 yrs. old. I remember having a barium swallow for something at about 6, having problems with constipation and being fed wheat bread and such to try to help it..... When I was around 14-18 was probably the worst. Horrible stomach issues, saw many Dr's, never really got a diagnosis except to say that maybe I had issues because I'd been on so many antibiotics for ear and kidney infections. As a young adult, I don't recall too many symptoms but had preterm labor with all 3 of my daughters which can be related to celiac, some stomach issues I attributed to being pregnant. Always had a tempermental stomach if I didn't eat on time. Got diagnosed after all these years because my middle daughter got diagnosed. Please stay on your diet. My mom died of a celiac related cancer, never was diagnosed with celiac disease so the gluten is doing damage even though you might not know it! Hang in there. I'm hoping the other things such as arthritis since I was in my mid-twenties are going to get better!!

VioletBlue Contributor

Actually you DO have symptoms. You are anemic. That is a symptom of Celiac Disease. You have trouble gaining weight and keeping it on. That is a symptom. You DO have symptoms.

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?

RiceGuy Collaborator

Actually you DO have symptoms. You are anemic. That is a symptom of Celiac Disease. You have trouble gaining weight and keeping it on. That is a symptom. You DO have symptoms.

Absolutely!

You also have increased hunger, which is a symptom as well, and is related to the deficiencies.

ravenwoodglass Mentor

I absolutely agree with the two previous posters. There may also be things that you never imagined were connected to celiac that just disappear. Celiac is so much more than an upset tummy and sometimes the upset tummy aspect is one of the last things to appear. I was in very bad shape by the time I was diagnosed and never in a million years did I think so many of my health issues were related to gluten. I do hope you are strict with the diet, it is not as restrictive as many think when they first start. There is a whole world of naturally gluten free food out there and some of it is high calorie. Once you heal I am sure you will find that gaining the weight you need to gain is easier than ever before.


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



Celiac.com Sponsor (A8-M):



kitgordon Explorer

If you feel like you are always starving, EAT! That's your body asking for the nutrients it needs to heal. And if you want to GAIN weight, you can eat ice cream and gluten free goodies - the breads and cookies are actually higher in calories than regular versions. Protein and fiber-filled fruits and veggies may help you feel full longer. I was always hungry the first month or so of the diet; my appetite is starting to normalize now after almost 2 months. Hang in there; you're not on the diet for "no reason" - your health is so worth it! And it does get easier, I promise.

tarnalberry Community Regular

Many celiacs are "silent" celiacs - no GI symptoms. Of course, they may not realize that their headaches, fatigue, or joint pain was a symptom. You are symptomatic, since you were anemic and are low weight, which means that your body is not properly absorbing what you eat. Stick, strictly, to a gluten free diet to avoid the long term complications of untreated celiac (continued anemia, infertility (for women), osteoporosis (for men and women), and digestive tract cancers). It will get easier with practice, and I find that I eat a far wider variety of foods, despite being gluten and dairy free, than many other people I know who have no food restrictions.

Coinkey Apprentice

Many celiacs are "silent" celiacs - no GI symptoms. Of course, they may not realize that their headaches, fatigue, or joint pain was a symptom. You are symptomatic, since you were anemic and are low weight, which means that your body is not properly absorbing what you eat. Stick, strictly, to a gluten free diet to avoid the long term complications of untreated celiac (continued anemia, infertility (for women), osteoporosis (for men and women), and digestive tract cancers). It will get easier with practice, and I find that I eat a far wider variety of foods, despite being gluten and dairy free, than many other people I know who have no food restrictions.

I went gluten free because I ran out of pasta and bread (I ran out of student loans), so I had to eat the rice and potatoes I'd been ignoring. A week of that and things that I didn't even realize were there, disappeared. "Something" lifted and freed me, I still don't have words to describe it. I also stopped taking crash naps on the couch after work, became motivated to clean up that sty I call my house, started willingly talking to people at college (I consider myself a shy person- I'm not really, apparently I can't keep my mouth shut), my naturally irregular periods have become regular and are becoming heavier, and after 2 weeks free of gluten I realized why and shortly after that I realized my stomach hadn't hurt in a while either.

I have also found that I eat a much larger selection of food now and have opened the door to a variety of cuisines from around the world. Food is more interesting and I am even expanding on what vegetables I am willing to try. I no longer stick to the "socially expected" food of the student. After a month, I have found that I feel sated with less volume of food.

Tigercat17 Enthusiast

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?

Hi Heather!

You really are so lucky you got diagnosed before you started having more serious symptoms. I was always like you always slender-100-106 lbs, 5'1", always a big eater & my only symptom was anemia 10 years ago. I was able to eat everything & never had any problems at all. Now, my body has been so through much because I was misdiagnosed for the last twenty years. 20 years ago it started with, sinus infections (4 times a year), bronchitis (once a year) and infertility. I couldn't fight of any colds & I had to take two sets of antibiotics every time I got one. No one thought to test me for celiac disease but now I know I had it then. 10 years ago I started having problems with my thyroid & was hypothyroid. Then two years ago I got a rare form of thyroid cancer. And a year ago I started having serve acid reflex for three months & started to lose weight pretty fast even though I was eating five meals a day. I went to eight different doctors & no one could figure out what was wrong with me. Finally they did the biopsy and I was diagnosed.

What makes me the saddest is that I was never able to conceive & now that I'm almost 40 years old I may never be able to have my own family because of this disease.

I know the diet is hard , but you are Very Lucky you found out when you did.

Hang in there! :)

Tina B Apprentice

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?

My husband is an internist and has diagnosed quite a few people who had no GI symptoms but the common symptom was an iron deficiency anemia that did not respond to iron replacement. Whenever he has a patient with an iron deficiency anemia and no cause of bleeding he checks for celiac.

  • 10 months later...
jen.mor Newbie

The exact same thing happened to me! I used to eat pasta and breads all the time and never had the typical celiac "tummy ache". I'm 18 years old and went to the doctor because my period was late. They found that it was a symptom for anemia and that eventually lead to the diagnosis of celiac, and an endoscopy confirmed that. I've been on a gluten-free diet for abot 5 months now (or trying to be but there's so much hidden) and so far I haven't really felt a difference. I guess I'm not as tired but I figured my tiredness before was just because I'm a new university student... Either way I'm like you and wondering if it's worth all this hassle. I guess it's all internal and I am helping my body for later on in life?

thleensd Enthusiast

We can certainly sympathize that getting used to the diet is rough. When you have some time, look through some of our stories here and hopefully you will see what your future could've held without the early diagnosis. If I was diagnosed based on my anemia and low weight, I would've saves many years of pain, suffering, and tremendous expense. I, too had no stomach problems, ate wheat all the time for the first 30 years of my life. A little anemia here and there, took iron, ate more. ... Three years later I was being loaded into an ambulance on the side of the road, had to have a caretaker for a very long time, and went into debt for not being able to work for two years.

I know it sucks. It's not fair. But you've just dodged a potentially huge bullet.

csb Newbie

Sometimes you dont need a symptom.

I am a normal height, normal weight, all my nutrient levels are fine but have just been diagnosed with celiac

  • 2 months later...
ShawnieB Newbie

Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?

Same here. I do have RA and they saw high levels of something in my blood and i had to get tested. Just a day before that i was scarfing down whatever I wanted without feeling a thing. every now and then I would get a sharp pain but i noticed it whenever I had a late breakfast. So should I still be as careful since I don't have bad pain or sickness?

ShawnieB Newbie

I've had arthritis since I was 16 =(

ShawnieB Newbie

Actually you DO have symptoms. You are anemic. That is a symptom of Celiac Disease. You have trouble gaining weight and keeping it on. That is a symptom. You DO have symptoms.

huh. Never thought about those things. Thanks

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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • 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.