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Kristen Bennett

Celiac or gluten sensitivity

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I will try to make my long story short, I have been searching my whole life for a diagnosis,  I have seen pretty much every doctor possible I even went through a spinal tap recently because they thought I had multiple sclerosis,  when I was younger I was always throwing up and having stomach problems, a couple hospital visits they thought I had appendicitis, I started having a neurological symptoms as well as  anxiety and depression,  The fatigue was just over bearing,  I was having numbness and tingling and muscle spasms all the time eventually started having seizures,  which kind of cycled through and stop happening after a couple months,  and then it dawned upon me my brother has celiac pretty severely, my grandmother also has celiac, my dad does as well, I don't know why I never thought that it could be my issue, for the last week I have   Been gluten-free and steering clear of cross-contamination,  my dizziness is improved my fatigue is improved as well as rashes I was getting on my arms  and sides,  I have no more muscle jerks or spasms, The problem is I have horrible insurance and I cannot afford testing, so I am at least trying to do it an home blood test,  I know it's not very accurate on telling me if I have celiac or not,   But the thought I may never know for sure if I have it is very daunting.  My family keeps telling me you don't need  to spend thousands of dollars to have a doctor tell you you can't eat something you already know you can't. Just was wondering if anybody else has been in my position and seeing if anybody has a vi just was wondering if anybody else has been in my position and seeing if anybody has advice,  I don't want to be known as one of those people who believe they have something and people with the disease frown upon them it's a very scary thing to think about. 

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Celiac.com Sponsor (A8):

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The Rash and various other symptoms are strong signs of Celiac, multiple people in your family also have it. I see several of your symptoms as very familiar to me myself, and I know that supplementation will help resolve the rest of your issues with a gluten-free diet. While we do suggest getting tested for confirmation if your limited as you say with insurance, and money then doing what is best for your health should be your focus right now. Go ahead and remove the gluten from your diet if you wish and go gluten free. If something happens later you MIGHT be able to put up with a gluten challenge and get tested at a later time.

I feel for you and see the issues, I have Medicaid myself and my severe gluten reactions and allergies got me on disability for a good while. Testing was a pain in the ass for me as finding a doctor that takes Medicaid is bloody near impossible where I live.

I do suggest supplementing Magnesium, Iron, Vitamin D,  and B vitamins primarily right now. Others you might be low in are folate, E,C,A and various others. The nerve issues are strongly related to various b vitamins, magnesium, and D.  I will share a link of what I take for a example.

BTW have you checked out the newbie 101 thread? And if you need help finding gluten-free foods I have a huge list that I have complied for people although we normally suggest a whole foods diet only for the first month or so. Might want to drop dairy and oats for a bit, by the sound of your deficiency issues I would say it would be a huge help doing so.

 

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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You can order your own blood tests at walkinlab.com. LabCorp does the actual testing.  The full celiac panel is I believe $298. You get results in a few days. It's recommended that people use a doctor but if you feel that route would be too expensive this is a thought. But you have to be eating gluten for several weeks for the test to tell you anything useful. The full celiac test includes TTG IGA and IGG, DGP IGA and IGG, IGA, EMA.

You can always send the report to your doctor.

 

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Talk to your doctor. With your family history and symptoms he/she may be able to diagnose based on resolution of your symptoms and family history. Also check with your local hospital if it has it's own lab.  Mine covered any labs at a greatly reduced cost based on a sliding fee scale.

Did you have an MRI before they did the spinal? Celiacs with neuro impact will have white spots on an MRI that resemble the lesions found with MS. Many neuro doctors don't know this. I went through what you did and they did a spinal on me also based on the MRI results. If my doctor had know what the UBOs (unidentified bright objects) were I would have been diagnosed a couple years sooner than I was.

Make sure if you supplement that you ask your doctor which ones you need to stop taking and for how long before they do a blood test to check levels. Sublingual B12 is a good idea when we have nervous system issues, but needs to be stopped for at least a week for an accurate blood level on testing.

I hope you get some answers and feel better soon.


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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Insurance is a pain! But, one of the interesting things about the Affordable Care Act (ObamaCare) is that it set individual out of pocket maximums. This year it is $7100. I realize that it is a HUGE amount of money, but if you started to pursue the work up this year and don't delay, you could get everything done (scope, labs, doc visits) and know the answer in a couple of months.  The most you would pay is $7100 for everything. Most hospitals have payment plans and some offer discounts if you pay cash. It's just a thought, but sometimes getting all your healthcare needs answered at once can relieve a lot of anxiety and be more affordable in the long run.

I wish you luck. I hate insurance issues.

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Thank you all very much, I have an appointment with my dermetologist today to look at the rashes I am having because they resemble DH, so I am hoping, given my family history, and if it is the rash they may be able to  diagnose me that way, I'll keep my results and bring it to a gastro whenever I can afford to see them. And regaurding the mri yes they did an mri and I did have a lesion on my mri but just one :)

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6 hours ago, ravenwoodglass said:

Talk to your doctor. With your family history and symptoms he/she may be able to diagnose based on resolution of your symptoms and family history. Also check with your local hospital if it has it's own lab.  Mine covered any labs at a greatly reduced cost based on a sliding fee scale.

Did you have an MRI before they did the spinal? Celiacs with neuro impact will have white spots on an MRI that resemble the lesions found with MS. Many neuro doctors don't know this. I went through what you did and they did a spinal on me also based on the MRI results. If my doctor had know what the UBOs (unidentified bright objects) were I would have been diagnosed a couple years sooner than I was.

Make sure if you supplement that you ask your doctor which ones you need to stop taking and for how long before they do a blood test to check levels. Sublingual B12 is a good idea when we have nervous system issues, but needs to be stopped for at least a week for an accurate blood level on testing.

I hope you get some answers and feel better soon.

 

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