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My Symptoms And Diet Test

jjohn78

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jjohn78 Newbie
jjohn78
Posted

Hi everyone,

I'm male and almost 34. I quit smoking in March after 16 years and thought "Allright, time to get healthy!"....so I thought.

My first major symptom happened at the beginning of the summer while I was getting over a bronchial infection. One morning I was urinating and started to feel kind of numb. Then I got that rushing feeling and felt faint. No problem, I'll go sit on the couch, but it didn't help. It was a very intense sensation that kept building. I knew something was wrong. Was I going to pass out? Was I having a heart attack? My heart was racing but I had no discomfort or pain. I was home alone with my 2 year old daughter.. I mustered all my strength and grabbed my daughter and ran next door to see if someone was home to help. No one was home so I set her down and just laid on the ground. I laid there for a bit until the feeling passed. When I was able to sit up, I was extremely shaky. My hands were trembling. I was extremely weak all day. I found a condition online that described exactly what happened to me and is a rare freak blood pressure that can happen when you have a bronchial infection and are male about my age...so I dismissed it as that.

For a few weeks I didn't have anything like that happen again. I did feel more tired than normal but chalked that up to being stressed about work and a new house.

Then starting a couple weeks ago, the "I'm going to faint" sensation started again. It happened several times and I was able to control it by laying on the floor as soon as I felt it coming on. The degree of the spells would vary. Sometimes I would just be a little off in the head...kind of confused feeling. My skin would itch throughout the day and it move all around my body. Then my abdominals and lower back were hurting. The spells were happening several times a day.. and I just didn't feel right. It would literally reduce me to rocking back in forth on the bathroom floor almost in tears. I couldn't really explain it to my wife, which made her worry even more. I eventually took myself to the ER. I was scared.

The Doctor at the ER ran blood and urine tests. Everything looked good except for a small amount of blood in the urine but he said it was such a trace amount that it was nothing to worry about. He dismissed the symptoms as a result ofme standing up to fast. Sure... whatever.

I followed up with my regular doctor. He was thinking maybe I was hypoglycemic so he had me do the glucose fast test. I passed it fine. More blood and urine tests..those came back fine. This of course, is in the span of a couple weeks. The main thing that showed on the test was vitamin D deficiency. Mine count was at 15 and I think he said it should be upwards of 150 in the summer. He prescribed me some heavy vitamin D dosages.

I had a friend ask me if anyone had said anything about celiac to me. I think the doctor actually had mentioned it around the time he was talking about the hypo. On a whim, and willing to try anything at this point. I went and bought fresh vegetables and lettuce and ate nothing but salads and boiled eggs for my meals.

I was feeling good. 2 days of salads and eggs and no major "attacks". Then one night, I had some pizza. Half an hour later I'm feeling really hot, my head is "cloudy" and my thoughts are jumbled. I'm nervous and figity. My skin feels funny and I'm light headed. So that was somewhat of an indicator.

Talked to my doctor again and he said it sounds like it could be celiac. He said he would leave it up to me to have the scope done but warned that it is taking patients 2 to 3 months to get them done. He advised I stay on the gluten free diet to see how I respond to it.

So with that, I've been eating gluten free for 4 days now. I haven't had any of the attacks like I had before but I still don't feel 100%. I would say though that during some parts of the day I feel better than I have in weeks.

Yesterday I had a charlie horse type cramp in my inner left thigh. Later, my right arm went nearly completely weak and had a severe loss of feeling in it. Both of these symptoms re-occurred today and not at the same time. It's not as bad as the full blown attacks but it is concerning non the less.

If anyone has any input for me, I would greatly appreciate it. I appreciate all the info everyone has shared on this forum so far.

-Jeff

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IrishHeart Veteran
IrishHeart
Posted

Talked to my doctor again and he said it sounds like it could be celiac. He said he would leave it up to me to have the scope done but warned that it is taking patients 2 to 3 months to get them done. He advised I stay on the gluten free diet to see how I respond to it.

I read your description of symptoms and I am sure that fainting sensation was scary. (I can relate) And I am glad you feel better off gluten. That is usually an indicator of a gluten sensitivity of some level.

However, your doctor's advice puzzles me. Why didn't he just do a celiac blood panel while you were still consuming gluten?

The longer you are off gluten, the less likely the tests (blood and biopsy) will be accurate.

Here is how testing is done:

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Some people test negative for celiac when in fact, they do have it. Or they may have NCGI (non-celiac gluten intolerance) --for which there is no current test.

In this case, they choose to remain on a gluten free diet because they feel better of it and see a resolution of symptoms.

I am concerned about these spells you are having. I had those myself.

Aprilelayne Newbie
Aprilelayne
Posted

So sorry for all the stress this is causing, its frightening to be alone with a child and dealing with fainting and bad spells.

What you described is exactly what I deal with my Irritable Bowel Syndrome (I'm not dx w/ gluten intolerance or celiac as of yet). Are these fainting or light-headed sensations associated anytime you urinate or use the restroom? You mentioned it in the first instance, but is the pattern of having the hot flash/tingly sensation --- restroom --- then light headed?

kittty Contributor
kittty
Posted

He dismissed the symptoms as a result ofme standing up to fast. Sure... whatever.

Grrrrr lazy doctors!! Isn't it frustrating when they diagnose you with a symptom instead of an actual CAUSE for the symptoms?

I had fainting spells, vertigo and dizziness, and migraine auras for several years, and the doctors just dismissed them. Even after ending up in the ER with vertigo so bad that I couldn't even open my eyes, the doctor told me "you have vertigo". Yeah, I knew that...but what causes the vertigo? He didn't know, and didn't really care to find out. People don't just have vertigo for no reason. It's a SYMPTOM not a cause.

But, since going gluten free I haven't had any of them.

What you described, with the faint feeling and the racing heart rate, sounds similar to a panic attack. The first time I had a panic attack it wasn't related to any anxious feelings, but just came on out of the blue at work one day. I had someone drive me to the ER because, like you, I thought it was a heart attack. The doctor told me it was a panic attack, and blamed it on the coffee I had that morning. Sigh...

I'm glad you had a friend who suggested celiac to you so quickly, and a doctor who was immediately willing to suggest a food-related link and test your vitamin levels. You are lucky in that regard. It will probably take several months of being gluten free, or longer, to feel normal again, but you're on the right path. I still get leg cramps occasionally after being gluten free for almost five months, but they aren't as frequent.

nvsmom Community Regular
nvsmom
Posted

That happens (happened) to me a few times a year. I got hypogycemic symptoms if I did not eat every two hours or so and always get light headed if I stand too fast. If I am sick or my body has a shock (like a sudden pain) I have passed out, or got very close where you see black but are still aware.

I've been undiagnosed celiac for a long time, and it can cause low blood pressure in some people, also the hypoglycemic symptoms. I would get tested as soon as you can, and continue eating gluten if you are getting tested. If you choose to go gluten-free without testing, please know that many people need to eat gluten for months to get an accurate test.

Hypothyroidism also can cause a light headed/hypoglycemic problem as it slows your metabolism right down. My most recent pulse, after running errands with three kids who were doing their best to drive me crazy, was 60. A low pulse with the low blood pressure from being celiac... well, it can mess with you. Hypothyroidism from autoimmune probelems is called Hashimoto's and it is strongly linked to celiac; it might be something to check as well.

Best wishes and good luck.

GFinDC Veteran
GFinDC
Posted

Hi JJohn,

I had fainting spells also, even after going gluten-free. For me it cleared up when I stopped eating soy. I think the medical types call it syncope. I had an encephalogram done and of course they found nothing. Well, there was a little bit of brain in my head but nothing to explain the syncope. No mention of a possible diet cause. The blood antibody testing is a simple procedure. They draw a little blood and send it the vampires. Ok, they sometimes send it to a lab instead to check for antibodies. You should ask for the full celiac panel. The endoscopy is optional IMHO, especially if you have positive blood results. It is much easier to do the testing now before you have been on the gluten-free diet for a bit. If you wait until later to get tested they will make you eat gluten for possibly months, which can be very unpleasant. Sorry for the jokes, I know this is scary stuff.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

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https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

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      New Celiac Mama in My 30s

      By tiffanygosci · Posted

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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
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      By knitty kitty · Posted

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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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