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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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    • trents
      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
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      By Itsabit · Posted

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    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

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