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AMP

Lupus? Ms? Or Just Crazy?

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I've been strictly gluten-free since February, when I was diagnosed with celiac disease. I returned to almost normal within a few months. However, the last few months I've been getting worse and worse. My symptoms are very different than before. The running list is: Nausea, fatigue, dull pain under my lower right rib cage (when the doc pushes in it's excruciating and I had my gall bladder removed 10 years ago), Extreme irritability as well as everything seems to make me cry. Not in a bad way, but I empathize with EVERYTHING if I see anything remotely touching I just cry, Extreme Brain fog, I can't seem to speak an intelligent sentence because I use wrong words, Off-balance all the time, Short brain shocks, Acne, and I become very startled with loud noises to the point I cry and my heartbeat just goes crazy, My bones are constantly aching almost like I have the flu, I've always had tingling and numbing in my feet but it is now worse. I have a bit of blurry vision, but don't know if it's just the brain fog. I live in a town where I can't seem to find a great doctor that is familiar with celiac disease.

I'm waiting for my ANA results because the doctor initially thought Lupus or MS or Arthritis, and she scheduled a neurology appt in March to rule out MS. I don't really think I have either, but would like your thoughts.

I'm desperate to get better because I get married next month and I'm a mess!

Has anyone else dealt with these problems after feeling healed? If so, what was wrong? Any suggestions on where I can go from here? I was better before I went gluten free and I hate how it's changed me.

I would really appreciate some feedback on what I should do next...

Thanks!!

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Have you had all of your vitamins/mineral levels checked? What about hormones--i.e. female, thyroid. Are you certain gluten isn't slipping in anywhere or that you don't have another food intolerance/allergy issue?

I'm sorry you aren't feeling well. I went through a similar phase earlier this year. It turned out my hormones were out of whack due to a supplement I was taking. I then got an ovarian cyst.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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I'll second the vitamins, minerals and hormones. You need D, B12, iron, and a thyroid panel. Brain shocks and tingling really sound like B12 deficiency. There is no harm in taking a 500 or 1000 mcg sublingual methylcobalamin (B12) supplement and 1000-2000 IU of vitamin D no matter what the tests say.

Also, how careful is your diet? A lot of us become more sensitive to gluten once our immune systems settle down from the ongoing gluten assault. People with neurological symptoms tend to be more sensitive to traces of gluten than folks with only GI symptoms. Celiac can rarely cause MS-like neurological symptoms, including white spots on MRI.

If you're eating a lot of "gluten-free" processed foods you may be getting too much gluten to tolerate. Many foods like Amy's brand and Chex are only guaranteed to be below 20 ppm gluten because of the shared facilities and even machinery. Sensitive celiacs don't tolerate that sort of thing very well. If you're eating "gluten-free" cereal in the morning, bread on a sandwich, and cookies for dessert it can be too much. Try eating only food you prepare yourself from whole, natural foods that you can easily tell is gluten-free. To give you some examples, there is no doubt that a bunch of grapes, an egg, a head of broccoli, or a potato are 100% gluten-free. Avoid eating out as well, as the inevitable cross-contamination may be causing you problems.

Consider eliminating casein and watch how you feel when you eat soy. A lot of celiacs cross-react to casein and soy is another problem food.

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Thanks for the help! The only thing that's been checked on me is thyroid, testosterone and iron, and of course the ANA. For the first time in 16 years, my iron came back normal! So I guess I thought it might be something else. The information about the Amy's dinners is extremely helpful. I eat them about once a week. I plan to start an Elimination diet tomorrow and I hope it helps. As for cross contamination otherwise, we have done everything to remove gluten from the house as well as all new pots and pans.

Thank you!!

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How strict are you with the diet? Are you eating a lot of processed foods? Do you drink distilled gluten alcohol? Have you eliminated gluten from your toiletries?

As mentioned the antibodies can attack the brain causing lesions very much like the ones found in MS except they are in a different location. Not all neurologists are aware of this and I was thought to have MS. I would have been diagnosed a long time before I was if my neuro wasn't so clueless about the UBOs. I had to be very strict with the diet to resolve my neuro issues.

Do get the tests done that the other posters have advised and be as strict as is humanly possible. If you are already taking supplements do check them for gluten, make sure to read the whole label as some will say gluten free but still contain barley or wheat grass. Also if you take any script meds do be sure those have been checked.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I had several of your symptoms before I was diagnosed with Hashimoto's Thyroditis (a decade before I was diagnosed with celiac) Numbness in my arms and hands (especially at night). The speech thing really freaked me out..I could hardly construct a sentence. There are so many autoimmune disorders that have similar symptoms. Probably a good idea to get additional testing to try to figure things out. Good luck with the wedding planning, if you can relax somehow through exercise or whatever that might help....stress seems to increase autoimmune symptoms.

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