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Still Trying To Figure Out What Is Going On


Mama of 6

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Mama of 6 Rookie

I am still trying to figure out what is going on. I am going to put it all in a nutshell, if you have seen my other posts I am sorry as it will repeat a little of the same info.


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Lisa Mentor

I am still trying to figure out what is going on. I am going to put it all in a nutshell, if you have seen my other posts I am sorry as it will repeat a little of the same info.

Did you go to the Doctor?

Mama of 6 Rookie

I am still trying to figure out what is going on. I am going to put it all in a nutshell, if you have seen my other posts I am sorry as it will repeat a little of the same info.

[/quote Ugh...pushed the wrong button. Sorry for the double posting. So all of my symptoms starting after the birht of my 4th baby it was a normal bith and no complications. At six weeks post partum I starting haveing fibromyalgia symptoms and was sent to a rheumatologist then to a fibromyalgia clinic all telling me I have fibro. For some reason I have always felt like I don't have it but thats what the tests pointed to since every test (whic has been a ton) has came out normal. When I heard of the gluten intolerance I thought fore sure that was me. So I went and got testing which came out negative and went on a gluten free diet. It helped tramendously the first few days then horrible symptoms for a few weeks. Now I have what seems like flare ups of the same symptoms but gluten free seems to be helping. I also had my vitamen B12, feratin,and thyroid checked because I get horrible numbness in my feet ( thats how I know the leg pain will start) It was all normal. I have so many symptoms yet so many tests that point to nothing. I have a couple of questions? Is anyone else going through anything that is similar? do you think the liquid multi vitamens would affect the test?

1974girl Enthusiast

I have wondered about you! You are the one with the swollen lymph nodes and the nightsweats right? If so..did you go get that checked out? I have been thinking of you and hoping you checked back in.

beachbirdie Contributor

I am still trying to figure out what is going on. I am going to put it all in a nutshell, if you have seen my other posts I am sorry as it will repeat a little of the same info.

Ugh...pushed the wrong button. Sorry for the double posting. So all of my symptoms starting after the birht of my 4th baby it was a normal bith and no complications. At six weeks post partum I starting haveing fibromyalgia symptoms and was sent to a rheumatologist then to a fibromyalgia clinic all telling me I have fibro. For some reason I have always felt like I don't have it but thats what the tests pointed to since every test (whic has been a ton) has came out normal. When I heard of the gluten intolerance I thought fore sure that was me. So I went and got testing which came out negative and went on a gluten free diet. It helped tramendously the first few days then horrible symptoms for a few weeks. Now I have what seems like flare ups of the same symptoms but gluten free seems to be helping. I also had my vitamen B12, feratin,and thyroid checked because I get horrible numbness in my feet ( thats how I know the leg pain will start) It was all normal. I have so many symptoms yet so many tests that point to nothing. I have a couple of questions? Is anyone else going through anything that is similar? do you think the liquid multi vitamens would affect the test?

I'm guessing your doctor tested for lupus, rheumatoid arthritis, other autoimmune conditions? Do you have results of any tests he did? Certainly with the difficulty you were having, something is going on. And I don't believe in fibromyalgia as a diagnosis, just like IBS. It's something I think they say because they don't know what's really going on.

Mama of 6 Rookie

Thank you for your reply both of you. I did get the lymph nodes checked and dr said come back in 6 weeks if there not gone. He doesnt think it is serious because my ears are plugged of and on. I have also been checked for rheumatoid arthritis, lupis and just about everything else. This week I am doing ok from being on the gluten diet, I am haveing very minimal pain. However my feet still go numb. At this point I am just going to stay on the gluten free diet.

frieze Community Regular

Have you been tested for diabetes? not just a fasting glucose, but a 3-5 hour glucose tolerance test, with insulin levels?


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Mama of 6 Rookie

Have you been tested for diabetes? not just a fasting glucose, but a 3-5 hour glucose tolerance test, with insulin levels?

I haven't been tested for diabetes, I had no clue it could cause similar symptoms. I will talk to the dr. Thanks to all of you who have replied. I would be way more frusterated without you all.

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    • catnapt
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    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
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    • catnapt
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