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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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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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