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Undiagnosed, Completely New To Celiac/gluten Issues

emilykay405

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emilykay405 Rookie
emilykay405
Posted

Found the site doing Celiac/Gluten Intolerance research today. So glad I found it! 

 

A little background. I'm 29 yrs old, I've had bathroom issues off and on since I was at least in high school. I can remember preempting most school days with an Imodium. Over the years I have had some issues, but nothing major. That's all changed now though. 

 

I was diagnosed with Sjogren's Syndrome in December, 2012. Thankfully, I only had to complain about fatigue for a month or so before I was sent to an internist and then a rheumy. The Sjogren's was confirmed by a lip biopsy in May, 2013. 

 

During this time my normally very very regular (I'm talking 2 hours after I eat I'm in the bathroom regular) bathroom habits started to go awry. On my worst days I'm going 6+ times a day and can go from constipation to diarrhea within the day. I still have near constant joint pain that's not responding to anything but Prednisone (which I refuse to continue due to side effects) and I have brain fog a few days a week.

 

The internist did a ton of blood work, too. My iron was/is low, however, it was determined that I have thalassemia (small red blood cells)  and that caused a false positive for anemia. I'm also chronically low in Vit D, I've done two 6 week mega doses and take 1,000 IU nightly and STILL have low normal counts. Other vitamins, I'm not sure but I take B vitamins like crazy and rarely get the pick me up from them. 

 

I saw a GI doc last week and he's ordered a colonoscopy and endoscopy. What pushed me over the edge to see the 'guts' doc (as my primary so eloquently put it) was the liquid diarrhea (if TMI, sorry) that didn't respond to OTC meds, not feeling hungry, random nights of horrible heartburn (again, doesn't respond to OTC meds) and a major upswing in abdominal pain. He did blood work and said everything was normal except for the inflammation markers. It's my understanding that any inflammation showing on blood work could be from the Sjogren's, but may also be from Celiac or other inflammatory bowel diseases. 

 

A couple of months ago I started having "near fainting" (docs term...not mine) episodes after eating lunch, specifically after meals containing lost of gluen. The first thing my primary thought was an issue with my heart or blood clots from deep vein thrombosis making their way to my lungs. I'm betting though that there's no thrombosis and I've confirmed with an echocardiogram that my heart is good. Has anyone had near fainting or fainting issues after eating gluten? I read online that it's not necessarily a symptom, but thought I'd ask. 

 

Ugh. So all of this has lead me to self diagnose gluten intolerance and jump through the necessary hoops to test for Celiac. I would love to dump gluten completely this instant but I'm impatiently waiting for a confirmation either way before I do. 

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I think you are on the right track. I would be surprised if they don't give you a positive diagnosis for celiac. Although there are other conditions that can cause your symptoms. I'm interested in hearing the results of your "guts" investigation. It certainly is warranted. You've put up with extreme symptoms for long enough, and you are too young to go on like this. If it is celiac, or non-celiac gluten sensitivity, then ditching gluten could prevent lots of future illness. It might even help your Sjogren's symptoms.

 

You might want to consider sublingual vitamin D and B12 and some of the other B vitamins. Also the liquid forms of minerals and fat soluble vitamins. With all your gut malfunction it could be solid tablets and food just is not being absorbed. You can get little bottles of vitamin D3 that you just put a drop under your tongue once a day. Also, sit in the sun a few minutes per day (without sunscreen).

 

Vitamin D needs to be balanced by vitamin A.  I take cod liver oil twice a day and I can feel a difference. Nordic Naturals makes a cod liver oil that actually tastes good. Also some of the minerals are needed to properly absorb and use vitamin D. You can get some of these in liquid form too.

 

With all the problems you are having it is important to pay attention to iodine. Celiac can cause thyroid issues and these could be related to chronic iodine deficiency, but that is not something the doctors test you for. They wait til your thyroid is so damaged you start having bad numbers on the blood tests.

 

I recommend getting a good book on vitamins and minerals. No matter what the tests find, I think you will benefit from doing a little research into what deficiencies you could be experiencing. The best thing is to find the cause of your digestive problems and fix that. Likely it will be gluten. Eliminating gluten will improve your digestion and you should ideally get all your nutrition from food, But if you are behind on some of the nutrients, you might want to supplement until you catch up.

 

This is a lot of overwhelming information coming at you . Take it one day at a time. Remember to relax and have some fun every day, if you can. Things will rapidly improve for you once these puzzle pieces start coming together.

emilykay405 Rookie
emilykay405
Posted
  • Author

Thanks so much for the support! I hadn't considered going to liquid vitamins, but I will give it a try. It makes sense that I can take so much in pill form and not see results in blood work or feel much of a difference with the B vitamins if my absorption is off. I'll definitely keep this post updated with results.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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    • Wheatwacked
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    • NanceK
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      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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