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Not Diagnosed Yet..........

chuckybaby

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chuckybaby Rookie
chuckybaby
Posted

Hi everyone. About three weeks ago I was admitted to the hospital after being diagnosed with severe anemia. They have not found a cause as of today. About 2 weeks ago my doctor did the Celiac panel blood test but came back negative. Referred to Gastrointerologist last week. Thinks Celiac's is still a posibility even with negative blood test. Ordered a CT scan which I had done last week. No results yet. He did the CT to make sure I had no blockages in small intestine so he could perform the camera endoscopy next. Will be doing endoscopy with biopsy after that.

While I was in the hospital they did a upper and lower endoscopy. Only found Reflux and hiatal hernia in the upper. (This Dr. failed to do a biopsy).

Symptoms include constipation, anemia, leg creepy crawlies ( felt like ants crawling under your skin in lower legs, This has gone away after I was given 4 units of blood in hospital). tiredness and joint pain occassionally. My grandson was diagnosed with type 1 diabetes this year. Brother and aunt have MS. My mom said her mom always complained of stomach problems but doctors never found anything. I am of Swedish/ European descent.

I work in a clinic and the ARNP in Oncology/hematology has looked at my blood work and insists that I have Celiac's. Just by my blood counts and symptoms.

I remember getting hit with a nasty flu like virus around April...maybe this could have been the trigger??? What are my chances of being diagnosed with the biopsy?

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mftnchn Explorer
mftnchn
Posted

If celiac disease is advanced enough to cause significant damage to the villi, if you have a good doctor who does multiple biopsy samples and a good lab to do the pathology reports, you have a good chance of a positive biopsy.

However, there can still be negative blood and biopsy results but a very positive response to the diet. So once you finish your tests, regardless of outcome, try the diet.

I suspect that your friend who saw your blood work may have picked up a low total IgA, plus the anemia--perhaps a low ferritin?

Sounds like a likely family history and ancestry. Flu or any stressor can be the trigger. If like me, you've been constipated all your life--we probably have just been undiagnosed our whole lives. Celiac can be present but "silent" too--no symptoms.

About 20% of celiacs present with constipation, if I remember right from my reading.

ShayFL Enthusiast
ShayFL
Posted

Get ALL of the testing done including GENETIC and then commit to trying a gluten-free diet for at least 3 months to see if things improve. It sure sounds suspicious, but not definitive. A pos. response to the diet is a good sign.

chuckybaby Rookie
chuckybaby
Posted
  • Author

Thanks for the replies. I just received a call from the Gasterologist' nurse and I am scheduled to undergo endoscopy with biopsy on October 30. Apparently the CT scan was good. Now I have another month before I find out anything. How much gluten should I be eating before this biopsy?

Lisa Mentor
Lisa
Posted

Open Original Shared Link

The capsule endoscopy is the most advance test available at this time. I hope you get an answer soon.

chuckybaby Rookie
chuckybaby
Posted
  • Author

The specialist told me when I met him last week that he would do the following in order...CT scan to check for any problems before doing a capsule endoscopy. Followed by upper endoscopy with biopsy.

His nurse called me today to set up appointment for endoscopy.....still not sure if it was the capsule or regular endoscopy....She is sending me paperwork in the mail...Had a bad cell phone connection so I will know more when paperwork comes in.

jerseyangel Proficient
jerseyangel
Posted
Thanks for the replies. I just received a call from the Gasterologist' nurse and I am scheduled to undergo endoscopy with biopsy on October 30. Apparently the CT scan was good. Now I have another month before I find out anything. How much gluten should I be eating before this biopsy?

The equivilant of 3-4 slices of bread a day--the more, the better.

Best of luck! :)

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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