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New Mystery Illness

btshea

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btshea Newbie
btshea
Posted

hi all,

I haven't posted in a while but i feel i need some Help.

I was diagnosed in 2003 and had been doing well for a few years but the past 6 months has been awful again.

All of my celiac levels are normal, I had a colonoscopy last week and doc just called and said that i have inflammation and white blood cells in my intestines, he suspected crohns but it came back negative, I have to go back in tuesday for follow up and more tests, he didn't get specific but he sad he was a little baffled but we'd figure it out.

i also have low b-12 and folic acid so I'm not absorbing.

It took me 16 years to get diagnosed with celiac and now that seems ok but now there is something else................infection........who knows....

Anyone have anything like this happen or suggestions.

Thanks, BT

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ShayFL Enthusiast
ShayFL
Posted

Did they test your Ferritin too?

If you cannot absorb, then request B12 shots. You can also get folic acid shots as well. B-complex is best.

MANY feel absolutely crappy when their B12 is low. Those shots might be just what you need. Since Celiac is closely related to other auto-immune diseases, you might have pernicious anemia (PA) and that is why you do not absorb B12. There are antibody tests for PA among others. If you have PA then you will need shots for life.

Some feel really bad when their Ferritin is low as well.

Food for thought......

plantime Contributor
plantime
Posted

It sounds like you might have an intestinal infection. The inflammation and white cells are the indicators I am looking at. Perhaps a round of antibiotics with something for yeast infection might help.

Rachel--24 Collaborator
Rachel--24
Posted

I would look into what is causing the inflammation (especially infection but could also be additional food intolerance). Most likely this is why you are having issues with malabsorption.

If the problem is yeast.....antibiotics would likely make it worse. You might want to consider testing to see if its SIBO before taking any antibiotics. It could be yeast, bacteria, parasites....or a combination of things...including food intolerance.

Parasites are very common.....but the testing available is inadequate so most likely will not show anything.

btshea Newbie
btshea
Posted
  • Author

hey everybody,

Thank you fo all the comments. before i had the colonoscopy i had a slew of blood work and stool tests, of course i don;t know what he tested for but found no bacteria infection, i suppose he was testing for gerd or something. The absorbtion thing is really recent, even when i first got diagnosed all my levels were normal up until now so this is something new and my doc did say i had "something brewing". He did make mention of the pernicious anemia (PA) as a next option if the crohns was negative, which it was, i have other family members with Crohns so it seemed a possibility.

All of this info is great, as you all know it seems you have to have suggestions with doctors rather than just listening to them.

Also before i went on vacation and was having bathrooming issues he gave me probiotic to try and it did help so a yeast problem could be it as well..........

I do have b-12 shots set up for next week( i have a lot of muscle cramping and muscle spasms).

thanks again, it just helps to know these other issues and possibilities.

XO, BT

CarlaB Enthusiast
CarlaB
Posted

You didn't mention symptoms ... check this out and see if it applies. Open Original Shared Link

I had a huge parasite problem that didn't show up in testing. Oregano oil, Uva Ursi, and Plant tannins helped a lot. I also took Humaworm, which helped even more.

btshea Newbie
btshea
Posted
  • Author

the symptoms are really the same as pre celiac diagnosis, constant loose stools, cramping, muscles aches, muscles spasms, even a weird one when i feel my stomach like spasming or intestines...

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ravenwoodglass Mentor
ravenwoodglass
Posted

Had anything changed at the time you started noticing symptoms again? Did you start a remodeling project at home or switch to a new brand of shampoo or conditioner? Are you using a new makeup line? Did you add in a new supplement or are you on a daily med? If you are on any generic med the binders can be changed at will and something that may have been gluten-free may have changed to not gluten-free 6 months ago. Did you get a new pet or change pet foods or litters? The fact that you can pinpoint when the symptoms started again and that they are so much like your prediagnosis symptoms makes me wonder if gluten is sneaking in there somewhere in small amounts.

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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
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    • 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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