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Looking For Guidance


Professor O

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Professor O Newbie

I can relate to those of you who said that doctors were beginning to look at you as though you were crazy. I have been quite sick since February and held off going to the doctor for many weeks, thinking my symptoms would go away on their own. They only got worse until I was missing work and beginning to wonder if I was dying. I felt like I was slowly being poisoned to death. That's when I went to the doctor.

I'll get back to the doctor after I tell you my symptoms. They don't really match the classic celiac symptoms but the more I read, the more I realize that there is no one profile. Anyhow, my worst symptoms was feeling nauseated and just sick all over. I had a horrible feeling in my belly all the time. As I became more ill, I'd find myself panting or gasping for breath, especially upon rising or with the smallest exertion. I had sores in my mouth and on my tongue (that one is classic) but also had extreme tension in my face and jaw, causing headaches and earaches. The other one was extreme mouth dryness.

Back to the doctors. I went to my GP and she was clueless. She sent me to a gastroentrologist who set up an endoscopy--not to check for celiac, but to look around in my stomach for ulcers and what not. I asked him to please do a biopsy for celiac while he was probing around. I told him that I was sure the issue was food-related and that my sister, brother, two nephews and a niece all have celiac. He did not.

I became so ill that I had three emergency room visits within 2 weeks of the endoscopy. Emergency room visits always ended with EKGs, CT scans, chest xrays and associated bloodwork. I told them each time that the problem was abdominal and that my heart and lungs were just perfect. They had the previous tests to prove it. Suggestions ranged from psychotherapy to a pulmonologist. I'm glad I have good insurance because those visits were a huge waste of time and money.

So, I decided to begin a gluten-free diet without a diagnosis. I actually eliminated wheat, oats, rye, barley as well as dairy, condiments, vinegar, coffee, tea and soda. The latter foods were bothering me anyway. After about six weeks, I'm starting to feel better.

My tale of woe sounds a lot like those of other people who have posted. It sure would be nice to hear from people who might have some insight. I look forward to your posting.

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roxieb73 Contributor

I can relate to those of you who said that doctors were beginning to look at you as though you were crazy. I have been quite sick since February and held off going to the doctor for many weeks, thinking my symptoms would go away on their own. They only got worse until I was missing work and beginning to wonder if I was dying. I felt like I was slowly being poisoned to death. That's when I went to the doctor.

I'll get back to the doctor after I tell you my symptoms. They don't really match the classic celiac symptoms but the more I read, the more I realize that there is no one profile. Anyhow, my worst symptoms was feeling nauseated and just sick all over. I had a horrible feeling in my belly all the time. As I became more ill, I'd find myself panting or gasping for breath, especially upon rising or with the smallest exertion. I had sores in my mouth and on my tongue (that one is classic) but also had extreme tension in my face and jaw, causing headaches and earaches. The other one was extreme mouth dryness.

Back to the doctors. I went to my GP and she was clueless. She sent me to a gastroentrologist who set up an endoscopy--not to check for celiac, but to look around in my stomach for ulcers and what not. I asked him to please do a biopsy for celiac while he was probing around. I told him that I was sure the issue was food-related and that my sister, brother, two nephews and a niece all have celiac. He did not.

I became so ill that I had three emergency room visits within 2 weeks of the endoscopy. Emergency room visits always ended with EKGs, CT scans, chest xrays and associated bloodwork. I told them each time that the problem was abdominal and that my heart and lungs were just perfect. They had the previous tests to prove it. Suggestions ranged from psychotherapy to a pulmonologist. I'm glad I have good insurance because those visits were a huge waste of time and money.

So, I decided to begin a gluten-free diet without a diagnosis. I actually eliminated wheat, oats, rye, barley as well as dairy, condiments, vinegar, coffee, tea and soda. The latter foods were bothering me anyway. After about six weeks, I'm starting to feel better.

My tale of woe sounds a lot like those of other people who have posted. It sure would be nice to hear from people who might have some insight. I look forward to your posting.

You have a family history of Celiac and they won't test you? Time to fire your doctor and get a new one! The doctor works for you. People forget that. I work in a doctor's office and without patients they would not have a practice or a home. My doctor listens to me. All I have to do is ask and I get any test I want as long as it is reasonable. If it isn't he will explain why he thinks so. But I have never been denided a test... I mean what can it hurt. Worst case it is negative.

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ravenwoodglass Mentor

You have that many relatives that are diagnosed and the doctor refused to even test! :angry: As the previous poster said you need to find a new doctor and write a letter to your doctor(s) and explain why. If they are part of a medical group you might even want to send copies of that letter to the head of the group.

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    • knitty kitty
      Welcome to the forum, @Sarah Grace, I had symptoms like yours.  I thought at first it was hypoglycemia, but having type two diabetes, my blood glucose meter didn't register a low.  If anything, my blood glucose levels were slightly high, but quickly returned to normal with me stirring around after waking.   I was certain dehydration, having similar symptoms, was not the cause.  A nurse advised me, a very long time ago, in order to stay well hydrated that one should drink a cup of water every time one visits the loo.  Drink sufficient water to have to make that visit about every two hours during the day.  The quick pinch test confirmed no dehydration.  If you pinch the skin on the back of your hand or arm, and the skin stays "tented" and takes a few seconds to return to normal, you're probably dehydrated. My problem turned out to be high histamine levels.  Our bodies can make histamine.  Plants and other animals make histamine, too, and, so there's histamine in our food.   Mast cells in our digestive tract make and release histamine as part of the autoimmune response in celiac disease, causing inflammation.  But, among doing other things, histamine is also a useful neurotransmitter.  Histamine levels increase in the brain in the morning, causing us to wake up.  High histamine levels can keep us awake, too, hence insomnia.  High histamine levels also can cause migraines.   Intestinal Bacteria can also make histamine and release it, which can then be absorbed into our bloodstream.  High histamine levels can worsen gastrointestinal symptoms.  If you eat a diet high in carbohydrates, those carbohydrate-loving, histamine-producing bacteria can colonize the small intestine, resulting in Small Intestinal Bacterial Overgrowth (SIBO).  Following a Paleo Diet (a diet low in carbohydrates) starves out the SIBO bacteria.   Eating a high carbohydrate diet can precipitate a Thiamine (Vitamin B1) deficiency disorder.  Thiamine is required to turn the carbohydrates into energy for the body.  Having SIBO can indicate an insufficiency of Thiamine.  Thiamine has antibacterial and antiviral properties and helps keep bacteria in the gut within check.  Thiamine helps Mast Cells not release histamine.  Mast Cells that do not have sufficient Thiamine release histamine at the slightest provocation.   Our bodies can break down histamine, if it has enough of the vitamins and minerals needed to make an enzyme, Diamine Oxidase (DAO).  Pyridoxine B6, copper, and Vitamin C are needed.  DAO supplements are available without prescription.  Vitamin D helps lower and regulate inflammation in the body.   Vitamins and minerals such as these can be at suboptimal levels.  Inflammation in the intestines can make absorbing essential nutrients like Thiamine difficult.  The eight B vitamins are water soluble and cannot be stored long, so we need to consume them every day in foods and supplements.  Thiamine can become low within three weeks.   Supplementing with vitamins and minerals helps boost absorption so the body can function properly.   Always check with your doctor and nutritionist before supplementing.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease, even if they've been gluten free for years.    References: Histamine Intolerance: Symptoms, Diagnosis, and Beyond https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11054089/ Dysbiosis and Migraine Headaches in Adults With Celiac Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9506300/ Histamine Intolerance Originates in the Gut https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/ Thiamine deficiency disorders: a clinical perspective https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/ Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9147846/ Mast Cells in Gastrointestinal Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/ Mast cells are associated with the onset and progression of celiac disease https://pubmed.ncbi.nlm.nih.gov/27619824/ Diamine oxidase supplementation improves symptoms in patients with histamine intolerance https://pubmed.ncbi.nlm.nih.gov/31807350/ Histamine Intolerance—The More We Know the Less We Know. A Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/ Hope this helps!
    • trents
      Have you tried a diet with a lower carb, higher fat content, something similar to the Keto diet? Are you familiar with the ketogenic diet? Fat satisfies and so curbs hunger and levels out blood sugar.
    • Sarah Grace
      I've was diagnosed celiac over 10 years ago when in mid 50s.  For a long time I have been getting headaches at night and in the morning and I suffer a lot of insomnia.  The headaches can be very severe and sometimes develop into a full migraine but other times they wear off within an hour of getting up and eating breakfast.  I have self diagnosed this a hypoglycaemia.  The medical profession in UK, where I live, does not seem to know anything of this and simply tests me for diabetes, which I do not have.  I know this condition is diet related and caused by carbohydrates, I avoid eating in the evenings.  Whatever I do, this condition seems to be getting worse and is very difficult to control.  Any advice would be much appreciated.
    • trents
      But that's the point Scott is trying to make. It is up to you. You do not have to go forward with another biopsy simply because your doctor wants you to. They work for you, not the other way around.
    • Jammer
      Hi Kate,   I am unsure if this is helpful or not. I have Webber calcium citrate everyday. I also react to less than 20 ppm of gluten. I have not reacted to Webber ever. (Fingers crossed it stays that way). Also, I get my blood tested every 6 months to ensure I have zero gluten exposure. It consistently comes back negative(0) to gluten.  A few years ago, my stomach would feel nauseous after taking Ca+  but thankfully that doesn’t happen anymore. Good luck and I hope you find something that works for you.    all the best,    J 
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