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

Not Sure If It's Celiac Or Not


sephiro499

Recommended Posts

sephiro499 Newbie

My mother told me a few days ago that my cousin was just diagnosed with Celiac and if I ever had any problem with upset stomach after eating, etc. My problem is a little weird, and very difficult to explain. These symptoms have been with me since I've been 8yo, I remember going for this test where I had to drink this white chalky substance and was put on this moving platform. They told me parents I had to eat smaller, more frequent meals. When I went to my normal primary care dr about 5 years ago he just told me to eat more.

After eating I will become more hungry than before I ate anything. Now I know that sounds ridiculous but if it isn't hunger than I don't know what it is. When I sit down to a meal I'll often only be able to eat a few bites then I'm 'full' (at least it feels like being full), and I'll be hungry in a half hour hour or so and normally finish the meal. I often crave sugar and or certain foods, like pizza. It seems like I'm never full, and I almost never gain weight (i'm male 6' 2" 180).

Now there are some foods that I know for sure will make my stomach upset, normally anything that is just whiteflour, like cup of noodles, microwave burrittos, whole wheat pasta (the worst). It seems like I don't know what to eat anymore. I've read the sugar buster book, and more recently Potatoes not Prozac. I was doing the PnP diet for awhile but then moved and moved away from it. It seemed to work for me but it wasn't enough.

Hey so if anyone has any input or maybe a similiar experience, I'd like to hear about it.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hi and welcome to the board :)

There are so many symptoms of Celiac that it is hard to tell if what you are experiencing could be a gluten intolerance.

My thought is, since your cousin has been diagnosed with Celiac, and the disease is genetic, you should ask your doctor to run the Complete Celiac Blood Panel for you.

It is very important that you continue to eat your normal diet prior to the test. Don't be tempted to cut out or down on gluten to 'see how you feel' just yet. :D

Once all testing (if you choose to have it) is completed, regardless of the results, you could always try and go gluten-free yourself. There are people here who tested negative (through blood, biopsy or both) who have seen their symptoms inprove or disappear following a strictly gluten-free diet.

Best of luck--keep us posted!

GFBetsy Rookie

Ditto Jerseyangel's advice!

Welcome!

carynanne Rookie
After eating I will become more hungry than before I ate anything. It seems like I'm never full, and I almost never gain weight (i'm male 6' 2" 180).

Now there are some foods that I know for sure will make my stomach upset, normally anything that is just whiteflour, like cup of noodles, microwave burrittos, whole wheat pasta (the worst). It seems like I don't know what to eat anymore. I've read the sugar buster book, and more recently Potatoes not Prozac. I was doing the PnP diet for awhile but then moved and moved away from it. It seemed to work for me but it wasn't enough.

Hey so if anyone has any input or maybe a similiar experience, I'd like to hear about it.

I should start with: I don't know yet if I'm celiac but strongly suspect it. That said, I have at least a similar problem: I eat ALL THE TIME. I snack on anything I want, eat large amounts of fatty foods (I stay away from sugars because if I eat those, I'm STARVING half an hour later) and don't exercise (just because I've recently gotten out of the habit). I used to exercise but it never really made a difference in my weight, only my energy levels. I'm Female, 5'9" and 127#. And I cannot gain weight. Recently I've noticed that pasta makes me VERY sick the next day after I eat it. I end up with a terrible stomachache and diarrhea the next morning.

So yes, I have a similar problem. And I'm getting tested hopefully next week for celiac.

Caryn

hannahsue01 Enthusiast

I can't tell you if it is celiac related or not but I know that I have the same symptoms. The hunger thing drives me nuts as it feels like I can eat all day and still be hungry. I hate that after eating a full well balanced meal I will feel like I havn't eaten in hours after about a half an hour. I can relate. I'm with the above statements that if celiac is in your family it definently warrents a test.

pinkpei77 Contributor

im not sure if its celiac or not but im ALWAYS hungry and ALWAYS eating.

once i start ,i cant stop.

i can eat a whole meal and then 20 minutes later eat another whole meal!!!

im not sure what its from.

sephiro499 Newbie

Yeah for me with the constant eating I just try and eat something reasonable and then just ignore the hunger information going to my brain. Sometimes I'm so hungry I can't sleep, and this happens pretty often. I thought I had eaten enough during the day but it seems like I don't.


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



Celiac.com Sponsor (A8-M):



carynanne Rookie
Yeah for me with the constant eating I just try and eat something reasonable and then just ignore the hunger information going to my brain. Sometimes I'm so hungry I can't sleep, and this happens pretty often. I thought I had eaten enough during the day but it seems like I don't.

I just thought I'd write in and say that I just got up out of bed at 12:30 because my stomach was growling and I couldn't sleep. I guarantee you I ate a full meal for dinner...

I wonder if it's to do with malabsorption? Your body not using the calories properly because of damaged villi? Assuming we're celiac, of course. (I've already half-convinced myself I am.)

Caryn

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
×
×
  • 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.