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ptkds

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ptkds Community Regular
ptkds
Posted

I have made a new blog page so that maybe I can get some help in a diagnosis. I have been dealing with some problems and no doctors can seem to figure it out. Please feel free to check it out, pass the address along, anything to spread the word! I need help!

Please go to my profile page to find the link!

Thanks!!!!!!

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Jestgar Rising Star
Jestgar
Posted

Well, I checked out your blog, but I messed up my comment there, so I'll say it here.

Have you thought about finding a good naturopath or nutritionist to help guide you through an elimination diet?

It's possible that some of your issues are caused by other foods. If nothing else, a monitored elimination diet will teach you more about your body and its relationship to food.

ptkds Community Regular
ptkds
Posted
  • Author

My problems are not caused by foods. There is something serious going on. Certain labs are off, but they just can't figure out what exactly is going on.

Thanks,

ang1e0251 Contributor
ang1e0251
Posted

What makes you say that your problems are not definitively food related? Is it because you have already done an elimination diet?

Those symptoms sure sound like they could be intolerances, especially since dr's have said they can find no big indicators.

Maybe you don't believe the food is a problem. If it isn't food than doing an elimination diet shouldn't make you any worse or better. Why not give it a try? Couldn't hurt, might help.

My daughter used to "lose" important things from time to time; school books, homework, etc. She would spiral into a panic. I would help her look for it while she followed me around screamiing, "it can't be there, I already looked ...... I never put it there!!" When I finally found the item, she would calm down, look chagrined and apologize. I told her, "when you can't find something, looking in the same place over and over won't find it for you. You have to look in places you haven't searched before even if it seems like you'd never find it there."

I would say the same to you, looking for answers in the same places over and over (dr's) without any satifactory results will be no help to you. It's time to look in the places your sure it could never be. Look for the answer to your health every where you can. You made a good start by posting it here. But I caution you, don't blow off the ideas that come your way. Nothing has helped you so far so maybe a strange suggestion could help.

rinne Apprentice
rinne
Posted

I'm sorry you are feeling so badly.

I am not a doctor but in my limited experience your description does sound like heart problems. Is it possible that any of the medication you are on may affect the heart?

My father, a very active 70 year old, started to have problems like you are describing and he went to the hospital, he refused to leave until they fixed it, turns out he needed a quadruple bi-pass and two days later they did the surgery. I am not suggesting this strategy for you, :) but I am saying if you know there is a problem then you may have to force them to pay attention to you.

The internet is a risky place to be looking for a diagnosis and our minds are powerful, in my opinion we need to be careful about the kinds of messages we give ourselves. I would encourage you to focus on gratitude for the moment you have now with your beautiful children and husband and to lean in every thought towards wellness .....as in I will live, I will live, I will live.

As for diet, this is a Celiac site and food is the solution for many of us here. I know you do not think that this is food related and it may not be but some foods can heal, others foods are neutral and some do harm. White sugar is a poison that robs our body of nutrition inorder to digest it, aspartame is toxic to some and if you drink diet drinks that could be contributing to your illness. Seriously.

What is your diet like?

I hope you find some answers soon and live a long and joyful life. :)

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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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