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

It's All Starting To Fit Now!

ncteacher

By ncteacher
in Doctors

Recommended Posts

ncteacher Newbie
ncteacher
Posted

I've been very low on energy pretty chronically for the past 6 years now. Interestingly, low energy periods always coincided with abdominal pain (very similar to what MS sufferers call the "bear hug"). Other symptoms progressively got worse: shortness of breath, joint pain, chest pain, nerve pain, back pain (sciatica), anxiety, and others. Two trips to the MRI cleared me of any major problems.

Blood tests in 2010 FINALLY picked up what had become SEVERE anemia and Vitamin D deficiency (my doctor wondered how I was still walking around). Doc told me that anemia that bad can only come from a bleed. I had upper and lower endoscopy to look for those bleeds, but only one benign polyp was found and removed.

After that, the advice was to take iron and D supplements and call if symptoms got worse. I had already suspected I was lactose intolerant, so I cut dairy out and looked for improvement, and there was some--although I still felt horrible by the end of every, single day. It wasn't until I ate a particularly bread-heavy breakfast one morning that I suspected gluten may be the issue.

Anyway, my whole point here is that I went through my medical records the other day and realized that there was never a blood test done to measure anti-gliadin antibodies. Anyone else have a similar misadventure? I'm just wondering if those tests may have made things a little less miserable and drawn out. Plus, I don't even think the upper endoscopy went as far as my duodenum...they were looking for stomach ulcers. :unsure:

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Welcome to the board, and welcome to the long-time-sufferers club. Your tale is unfortunately too similar to those of too many here.

When a patient walks through the doctor's door with symptoms of what we now know to be celiac disease, that is so seldom the first, second or even third, fourth or fifth thing that pops into his/her head. The most common one seems to IBS :P They will think of stomach ulcers, they will think of cancer, Crohn's, ulcerative colitis; they will think of mental illness/disorder, hypochondria, any of hundreds of other diagnoses, but only one in a thousand will think, "Aha, this could be celiac disease." :( So they do every blood test in the book except celiac, and they perform upper and lower endoscopies without taking the celiac biopsies, and tell us to take medications to treat our symptoms :o

Congratulations on figuring it out for yourself :)

Tusofsky Newbie
Tusofsky
Posted

I'm shocked, after all I've seen in these forums, that during my endoscopy (looking for ulcers) my doctor decided to take biopsies to test for celiac. He never ONCE mentioned this to me before hand. He mentioned it in passing after my endoscopy was done (I didn't even know what he said, I saw him for like 20 seconds and wooooosh he was gone again) but on my report, there it was. "Biopsies taken with cold forceps to test for celiac."

Now if only he'd talk to me about it :P He's not very patient friendly, as I said, I barely have seen him. I haven't gotten my results back, but seeing that then learning about it, everything seems to just CLICK. But the thing is, I would have NEVER thought to check for celiac, so I'm glad I found a doctor who actually did.

I saw in another thread, if you can get tested for it, then probably should? The point was "if you KNOW you're less likely to cheat" which I think is true. I know it would be for me anyway haha BUT still, if you're feeling better (either way) then that's awesome! It's what everyone wants.

Skylark Collaborator
Skylark
Posted

I think diagnosis misadventures are more common than not. I spent many years on psych meds and nobody thought to connect the fatigue, bipolar illness, chronic diarrhea, stomach-aches, thyroid problems and .... CELIAC.

Like you, I'm not going to eat wheat and get tested. I don't really care about the labs or results because there is no question in my mind that I need a 100% gluten-free diet. (And very little question in my mind that I am celiac rather than gluten intolerant.)

Broberts Newbie
Broberts
Posted

I am sorry to hear how bad you have been feeling. I have not been as sick as you, but I have had low energy for awhile now and it wasn't until about a month ago when I woke up with severe joint pain that I thought I should see a doctor. He tested for many things and one came back positive for celiac. For the week prior to the doctor visit, I cut out gluten. I felt better almost immediately. It has been about three weeks now and I now realize I have at least an intolerance to gluten. Today the doctor agreed and things from my past have started to make sense. Anyway I am not having anymore testing done as I know that I can't tolerate gluten. I proved it again tonight with dinner. The treatment is about the same so I don't need a specialist at this time. Good luck to you and try going gluten free, you will notice a difference quickly. I now realize it isn't normal to feel like you ate a thanksgiving meal every time you eat a meal. Good luck.

mushroom Proficient
mushroom
Posted

I am sorry to hear how bad you have been feeling. I have not been as sick as you, but I have had low energy for awhile now and it wasn't until about a month ago when I woke up with severe joint pain that I thought I should see a doctor. He tested for many things and one came back positive for celiac. For the week prior to the doctor visit, I cut out gluten. I felt better almost immediately. It has been about three weeks now and I now realize I have at least an intolerance to gluten. Today the doctor agreed and things from my past have started to make sense. Anyway I am not having anymore testing done as I know that I can't tolerate gluten. I proved it again tonight with dinner. The treatment is about the same so I don't need a specialist at this time. Good luck to you and try going gluten free, you will notice a difference quickly. I now realize it isn't normal to feel like you ate a thanksgiving meal every time you eat a meal. Good luck.

If you tested positive for celiac, you are celiac, and no, you don't need a specialist to tell you that. :) Welcome to the board.

GottaSki Mentor
GottaSki
Posted

Welcome - took over 20 years of seeing docs for the same symptoms that eventually became so bad I was in bed except for a few hours a day - the year I was dx'd I had over 50 blood tests and scans looking for every obscure disease until my internest called all five other docs in the clinic that day into the room so they could all question me at one time - one of them had I been tested for celiac - my doc said yes and I said NO - I has never heard of nor researched celiac or gluten. Well I was possitive and for a very long time I was upset/extremely angry with all the docs that had dismissed all my symptoms over the years on anemia, strss, overwork, hormones, depression -- anything rather than really listening to my symptoms.

Unfortunately my story is common - it seems there is improvement with celiac awareness...but it will take years before many docs add it to the front of their thinking - rather than one of the last things.

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748
    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.