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Celiac or gluten sensitivity

Kristen Bennett

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Kristen Bennett Rookie
Kristen Bennett
Posted

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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Ennis-TX Grand Master
Ennis-TX
Posted

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/

 

tessa25 Rising Star
tessa25
Posted

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.

 

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

TexasJen Collaborator
TexasJen
Posted

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.

Kristen Bennett Rookie
Kristen Bennett
Posted
  • Author

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 :)

Kristen Bennett Rookie
Kristen Bennett
Posted
  • Author
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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    • 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? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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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