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Muscle Weakness, Numb Extremities
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7 posts in this topic

Anyone have this, my sister has these symptoms, but doesn't want to get

tested for some reason.

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I am having numbness and tingling in my feet and hands, muscle weakness and pain all over my body, no appetite, and forgetfulness. I thought it might be related to the Lipitor that I have been taking, but my doctor thinks it may be because of the new grains I have been eating. I have been eating rice flour, potato flour, xanthan gum, tapioca flour, garbanzo bean flour, and quinoa flour. I have also been using flax. Can eating these foods cause the problems I have been having? Bloodwork has ruled out viruses, bacterial infections, malabsorption, and allergic reaction. I go to a specialist this afternoon because my reflexes are very slow. Suggestions are very welcome!

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Dessa, I've read that some people have a hard time with quinoa. You might try eliminating that one and see if it helps. By the way, I went to the doc and she said my liver is fine, looks like I may have the beginnings of a gall bladder problem. I'm seeing my new GI guy soon, thank goodness!

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I am glad you're getting some answers! I just learned this afternoon that my liver problems are why my muscles feel so bad. When the liver heals, the muscles will feel better!

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Hi Dessa:

I'd recommend you get a second opinion. The 1998 PDR lists as side effects for Lipitor: "abdominal pain, back pain, headache, joint pain, leg cramps" (which sounds like your 'pain all over (your) body') as well as "muscle aching or weakness" which you also mentioned. It's easy for doctors to blame something in your diet, because they know SOOO little about nutrition, rather than find a better drug than Lipitor for you. <_< You could even check a more recent Physician's Desk Reference for Prescription Drugs to see what side effects for Lipitor are NOW listed.

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hi,dessa, an alarm went off when i saw your symptoms. i agree with burdee, please check into the lipitor asap. my sister-in-law was having the same symptoms for quite a few years---many --many tests,many--many doctors until a new internist questioned lipitor and took her off it. all that suffering for so long and it was the lipitor. talk to your doctor again or get a second opinion. hope you improve.

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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