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

My Story And Celiacs


UpbeatPete

Recommended Posts

UpbeatPete Explorer

Hi everyone,

I have been reading many of your posts for the last couple of days and I feel very sorry that it took so many of you so long to discover what was wrong. I can understand what some of you have went through with the frequent doctors visits and their blatant disregard for what I was feeling (some are more willing to listen, especially the one I am with now).

Currently a Senior in College and started feeling sick 1st semester Sophmore year (A little over 2 and a half years)

I have been dealing with different symptoms, all worsening over time and was wondering if they sound like Celiac symptoms?

Constant Pressure on my head (feels like I have a vice grip on my head; sometimes are migraines)

Low potassium (On medication for that, potassium and a potassium sparing diuretic)

Constant and excessive fatigue

Incredibly tired (Many days I could sleep for 10 hours and will take a 3 or 4 hour nap.) I never feel rested and always think about the next time I can crawl into bed.

Brain fog all the time (get's really bad after eating)

Inability to pay attention, which was never really a problem, especially when watching sports

light sensitivity; when it is sunny my head pounds

Muscles feel incredibly week

Memory continues to get weaker (memorization was once my strongest asset)

I feel drunk or buzzed after eating. It is really bad when I go out to eat (Qdoba is killer)

Sometimes deal with constipation

So tired I never want to spend time with friends and go out

Very irratible and easily annoyed

Trying to read has almost become over whelming, it is like sensory overload.

Do my sypmtoms sound like Celiac Disease?

I was once really active, running or playing basketball almost everyday. No, I can hardly get up and go for a walk.


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



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

Hi Pete!

Thank you for sharing your experience. Are you living on or off campus?

At first it seems pretty overwhelming to go gluten-free, and you'll miss certain foods, but it's so worth it to finally know, and be able to eat foods that won't hurt you. And the gluten-free diet gets easier!

Did the rest of your first degree relatives get tested? (I'm curious because I'm one of five children, and so far I'm the only one that is symptomatic, but I worry about my brothers and sisters, and their children and grandchildren. My brothers seem to think it's something that only happens to women (my mother carried the genes).

Good luck, and good health to you! Your energy will return, and you'll feel more like youself again. And good luck with finals!

UpbeatPete Explorer

Thanks for the reply Marilyn.

I should have been more clear with my title; I have not be diagnosed yet I was wondering if my symptoms sounded like Celiac?

mushroom Proficient

Hi everyone,

I have been reading many of your posts for the last couple of days and I feel very sorry that it took so many of you so long to discover what was wrong. I can understand what some of you have went through with the frequent doctors visits and their blatant disregard for what I was feeling (some are more willing to listen, especially the one I am with now).

Currently a Senior in College and started feeling sick 1st semester Sophmore year (A little over 2 and a half years)

I have been dealing with different symptoms, all worsening over time and was wondering if they sound like Celiac symptoms?

Constant Pressure on my head (feels like I have a vice grip on my head; sometimes are migraines)

Low potassium (On medication for that, potassium and a potassium sparing diuretic)

Constant and excessive fatigue

Incredibly tired (Many days I could sleep for 10 hours and will take a 3 or 4 hour nap.) I never feel rested and always think about the next time I can crawl into bed.

Brain fog all the time (get's really bad after eating)

Inability to pay attention, which was never really a problem, especially when watching sports

light sensitivity; when it is sunny my head pounds

Muscles feel incredibly week

Memory continues to get weaker (memorization was once my strongest asset)

I feel drunk or buzzed after eating. It is really bad when I go out to eat (Qdoba is killer)

Sometimes deal with constipation

So tired I never want to spend time with friends and go out

Very irratible and easily annoyed

Trying to read has almost become over whelming, it is like sensory overload.

Do my sypmtoms sound like Celiac Disease?

I was once really active, running or playing basketball almost everyday. No, I can hardly get up and go for a walk.

Hello, and welcome.

I have highlighted the symptoms you list which are most commonly associated with celiac; not to say that the others are not, however. Also, there is a general nutrient deficiency with the disease, although the low potassium could be related to the diuretic, even though it is potassium sparing. I would think it definitely warrants being tested for celiac because there is such a wide variety of symptomatology. Some people have mainly GI symptoms, some have mainly neurological symptoms, some are silent with no symptoms of any kind.

UpbeatPete Explorer

As of last month my potassium was nearly up to a normal level and my kidney Doctor had being saying once we got it up I would feel much better.

So far not the case (Also, other people that have this low of potassium do not show near the fatique, headaches, and brain fog I do and that is why I believe the potassium is a red herring.?

mushroom Proficient

I had very low potassium last year that I was totally unaware of, so low that my heart went into atrial fibrillation, and I was otherwise symptomless, so I think you could be right.

UpbeatPete Explorer

Looking at your sig, you were already gluten free at that point? My kidney doctor thought and still thinks I have Gitelman's syndrome. However, I believe differently because only my potassium is low; Gitelman's sufferers have low sodium, magnesium, potassium, and chloride.


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. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    2. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    3. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

    4. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748

    jlcvt
    Newest Member
    jlcvt
    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)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.