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New Undiagnosed Issue

NewNicole

By NewNicole
in Related Issues & Disorders

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NewNicole Apprentice
NewNicole
Posted

I was officially diagnosed with celiac a year ago. I have been gluten free for that year and I am now starting with a host of other issues. My doctor is confused and I am left just dealing with all of these issues. A few months ago I had an incident while driving where I started to go dizzy and blacking out. I had to sit on the side of the road for a few minutes but it did go away and I never had that experience again. But a month after that I started having numbness and tingling in my right arm. Some days the pain will also be in the left arm or even my legs. I do have moments where my legs feel weak and I'm pretty sure I am going to fall. I don't have this issue every day. But I would say that I do have it at least 3 days a week. My doctor did a blood test to make sure my thyroid and iron was normal. Then he ordered an MRI and a nerve study. All came back normal. I have had an issue with constipation even though I eat a ton of fiber and I take senna. But I don't think that is related to my arm issue. Does any of this sound familiar to anyone else? Could celiac be causing other problems? Thanks for the help.

Nicole

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Takala Enthusiast
Takala
Posted

These are all symptoms of celiac neurological issues. That and the chronic constipation suggest you are still getting cross contaminated in some way. Try reviewing everything that goes into your mouth, and seeing if you can weed out where the possible culprit is. You may be a super sensitive, and have to be super vigilant about medications, what brands of foods you use and what sort of lotion you put on your hands, etc. Also, pet foods and pet saliva can be another way to get cc'd, and even some kitty litters contain wheat, so you may want to check that, if it applies to your situation.

GFinDC Veteran
GFinDC
Posted

Hi,

Your doctor should test all you vitamins / mineral levels to see if they are normal. You may not be healed enough to absorb them completely at 12 months. You also should look very carefully at what you are eating and make sure there is no hidden gluten in the foods. Things you drink like coffee an tea need to be checked and also vitamin pills and meds.

Vicky-1989 Rookie
Vicky-1989
Posted

Have you had your vitamin B12 levels checked? You can experience tingling and numbness if you're deficient in B12.

As for the dizziness and blacking out, I also had problems with this and a blood test revealed low blood sugar (was 50 AFTER eating). Even though you've been gluten-free for a year, your stomach may not be fully healed yet so you might still be having trouble absorbing carbohydrates (well that's my problem anyway).

But I do believe Coeliac could be causing all of these problems.

rosetapper23 Explorer
rosetapper23
Posted

You are describing symptoms of Vitamin B deficiency, especially B12 (very common in people with celiac). Your doctor should be monitoring your B12 and folic acid on a regular basis. You didn't mention this, so I'm assuming your doctor is unaware of this common malabsorption problem among celiacs. You can request an immediate test, or you can begin taking 2000 micrograms of sublingual Methyl B12 twice a day under your tongue. It's cheap and found over the counter. If a B12 deficiency is causing the numbness and dizziness, it should be alleviated in short order with a sublingual treatment. It's possible that your doctor will order B12 injections, but, in the interim, the sublingual method should work well.

You may wish to buy a Vitamin B complex to take on a regular basis. B vitamins are water soluble, so you don't have to worry about toxicity if you take a daily Vitamin B complex.

rosetapper23 Explorer
rosetapper23
Posted

Please read my response on your other thread--it may be pertinent.

NewNicole Apprentice
NewNicole
Posted
  • Author

My doctor is learning about celiac through me. Unfortunately he doesn't know a lot. I didn't realize that vitamin B could cause things like this. I will check on that immediately. I assumed that once i was gluten free I would be absorbing all the nutrients and I was in the clear. I will have to keep an eye on this forever? And is there anything else I need to monitor? Thank you so much for the help.

Nicole

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rosetapper23 Explorer
rosetapper23
Posted

Yes, besides iron, thyroid, Vitamin B12, and folic acid, your doctor needs to monitor your Vitamin D level. These are standard tests for people with celiac. Even though you've adopted a gluten-free diet, you may still be healing....so absorption is something that needs to be checked periodically.

NewNicole Apprentice
NewNicole
Posted
  • Author

Thank you I will have those checked. I know my TSH has been fluctuating between .5 and 5.7. But they don't seem concerned and just leave it alone. Do you know if it's the GP that should be testing all of this or if it's the GI doctor? Thanks.

rosetapper23 Explorer
rosetapper23
Posted

I get tested through my GP. And has your doctor explained why you're having such a HUGE fluctuation in your TSH? It sounds as though you might have Hashimoto's (which does go up and down). If your GP is not an expert on thyroid, perhaps you can get a referral to an endocrinologist.

NewNicole Apprentice
NewNicole
Posted
  • Author

I think I will have to find a new doctor. My GP really has no idea what to do with me. When I was originally thought to have celiac disease it was my GI that saw the 5.7 level. He told me not to worry because the gluten free diet may regulate the thyroid. So unless it goes way out of the normal markings I understand they will just leave it alone. Does that sound right? I also know that my iron has been a major problem over the years but again they are reluctant to treat it. From what I have been told I have iron in my body but it's not binding. That was one of the indicators of celiac.

  • 1 month later...
pricklypear1971 Community Regular
pricklypear1971
Posted

I think I will have to find a new doctor. My GP really has no idea what to do with me. When I was originally thought to have celiac disease it was my GI that saw the 5.7 level. He told me not to worry because the gluten free diet may regulate the thyroid. So unless it goes way out of the normal markings I understand they will just leave it alone. Does that sound right? I also know that my iron has been a major problem over the years but again they are reluctant to treat it. From what I have been told I have iron in my body but it's not binding. That was one of the indicators of celiac.

No. A TSH of 5.7 can give you every nasty symptom of hypothyroidism on the planet, especially exhaustion and c.

You need to be tested for Hashis antibodies, and at least try thyroid replacement therapy. It may be the problem, not extraneous gluten.

SleepyBunny Apprentice
SleepyBunny
Posted

TMI ALERT lol Even after going gluten-free I had bad c. My tummy laughed when I tried magnesium citrate. It just looked and said "this is all you got?" lol Even after going on levo nothing. My TSH was around where yours is 5. something. I started taking armour and it has gotten a lot better.

Like the others mentioned have your B12, Vit D, iron, all of that checked. I was low in all of these and feel like crap :( And like you some days are better than others. With the b12 if your test comes back in range but is under 500 it's low. My labs even had a note saying if your b12 is between 200-400 may experience neuropsychiatric and hematologic abnormalities. Um hello that doesn't sound normal to me! In Japan their "low normal" is 500. My labs "low normal" is 200.

"In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered

  • 2 weeks later...
Izibelle Newbie
Izibelle
Posted

I agree with PricklyPear; an out of balance thyroid can cause a whole myriad of symptoms. I am always looking for a natural solution and am not a huge fan of medications at all but, in the case of thyroid, it can be helpful. Just don't let them talk you into radiation. The meds only work for me sometimes. I have a suspicion that the pigs that they harvest the thyroid from are not tested before extraction. So if the pig had thyroid problems... lol. I watched a video by Andrea Beaman, a holistic health counselor, on healing thyroid conditions that was very informative. Some of her suggestions and things I have learned from school(Institute for Integrative Nutrition), in regards to thyroid, may be helpful to you. Try to not consume foods with goitrogenes because they suppress thyroid function. You can find list online of specifics of that. Cruciferious veggies, strawberries, some nuts, ect.. If they are cooked the goitrogenes are released and its not a issue. Also adjust the types of iodine you eat. Use sea salt instead of table salt, eat lots of seaweeds and fermented foods. Paying attention to getting the right kinds of fat can also be helpful(that will help with digestion too.) Good luck with all of this. I know how frustrating it can be to feel terrible and not know what to do. Hope some of these suggestions help you.

cavernio Enthusiast
cavernio
Posted

You should get another endoscopy to see how well your intestines have healed too. I'm going to get one in a year's time, because that's standard practice. Well, actually 6-12 months was what my GI told me, but I told him I'd rather get one in a year because my damage was so extensive and I've read a lot about how long it can take to heal, and I don't want to go in at 6 months to find litle has changed and then fall off the gluten free bandwagon or something else stupider.

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