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My Symptoms--Very Frustrated!


BuckeyeGirl

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BuckeyeGirl Newbie

Hello- I want to share my story to see if others have had similar symptoms and experiences. My GI issues began about 5 years ago when I was diagnosed with severe acid reflux. At that time, my only symptom was losing my voice and frequent coughing and throat clearing. After diagnosis and starting acid reflux meds, I started having more of the traditional symptoms of heartburn, pain, and discomfort. Over the years, I've tried every single acid reflux med on the market with no improvement in symptoms. The doctors have been stumped by it after numerous upper GI endoscopies to rule out H. plyori, strictures, etc. I've finally given up on meds (they seem to make my symptoms worse) and seem to have found a happy medium with taking rolaids, etc. as needed.

About 2 1/2 years ago, I transitioned to a vegetarian diet. Not long after, I started noticing a difference in my stools- much, much larger, although still very formed- and I started having extremely bad gas all of the time. I attributed this to the change in diet and eating more fiber and beans. Over the past year, the gas has continued to worsen and I've noticed abdominal bloating. I've also had belching, which is a change for me. Over the past year, I've also become lactose intolerant. I first noticed an issue with the milk when I suspected it was causing my skin to break out and I was having abdominal bloating and discomfort. I was also having intense cravings for milk and I thought it would be a good idea to cut it out of my diet. I was still able to tolerate cheeses and yogurt though.

About 3 weeks ago, I started having diarrhea. It came on out of the blue and I thought that perhaps it was something that I had eaten or a stomach virus I caught. It is happening about 3-5 times per day. When it became clear it wasn't resolving, I visited my doctor who tested me for the following to rule out celiac disease and other issues:

Gliadin AB IGA

Tissue Transglutaminase I

Tissue Transglutaminase

Endomysial AB

CBC w/Plat

Stool Culture

Fecal Lactoferrin

C-diff

Ova and Parasites

The doctor's office called today and said all tests were negative and the bloodwork was within normal limits. I will be able to obtain a copy of the actual results on Friday (I asked if the IGG or IGA were elevated at all and was told no). I've been trying a trial of gluten- free and dairy-free after the doctor's appointment last week. I've also started taking a probiotic. It's been 4 days and I'm not noticing much of an improvement. On Monday, I was feeling good and had no diarrhea or bowel movement at all; Monday night, I went out to eat dinner and ordered a salad. I suspect there was gluten in the salad dressing, but I'm not sure how much a small amount of gluten would affect me at that point (it had only been 2 days since going gluten free). Tuesday (yesterday), I felt extremely ill and had several bouts of diarrhea and abdominal cramping. Today, the diarrhea continues.

Other symptoms I have had throughout my life (I am 27 years old):

-Pre-teen- teen years: Unexplained swelling and pain in the finger joints. Arthritis ruled out.

-Puberty-present: Unexplained swelling of an inguinal lymph node.

-Early 20's- present: Ovarian cysts that spontaneously resolve

-Early 20's- present: Migranes and frequent headaches that have become progressively worse.

-Last 3 years- present: Fatigue that has become progressively worse. Anemia ruled out. Doesn't matter how much sleep I get, I always wake up tired.

-Early 20's- present: Seasonal allergies/chronic congestion

Over the past few years, I have been generally feeling very unwell. I have frequent colds/viruses. I also get fungal infections very easily (I've had a reoccuring fungal ear infection for the last few years and several vaginal yeast infections). I am a very active person that has always followed a healthy diet and taken good care of myself, so I don't know why I feel the way I do. I've been taking a quality multi-vitamin for several months.

If anyone else has had similar experiences and has discovered that they are gluten intolerant, please let me know. I am praying that I can find an answer soon.

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BuckeyeGirl Newbie

I forgot to mention other issues that I have-- extreme PMS, cramping, mood swings, pain, etc. Also, I've had issues with anxiety and panic attacks as well. I'm an athlete and every time I get injured, it takes forever to heal or I have nagging injuries that never fully heal.

Of course, I do not know if any of these are related and there is no way of knowing for sure...I just want to throw them out there to see if these are common symptoms for those with gluten intolerance or celiac's disease. Thanks!

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BuckeyeGirl Newbie

And- I've thought of some more symptoms that I think may be important. Sorry, but there are a lot! I've had "bladder" problems since my teen years. Frequent bladder infections and then frequent urination, urgency, etc. WITHOUT an actual infection. This was eventually diagnosed as cystitis (or "spastic bladder") and I was on Ditropan for awhile. I eventually found an herbal remedy that takes care of it for the most part, but it flairs up every once in awhile. Thanks for reading.

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    • glucel
      OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.
    • glucel
      Thanks @knitty kitty, I read your v b info with much interest for last few months. Here is my weight per event: sept 8, 2022- 181 lbs june 1, 2024 gluten free july 4- 143.5 lbs july31- changed from regular b to methyl folate and b12. oct 8- 150 lbs So weight hopefully coming back albeit very slowly. So probably my villi may be healing and methyl helping although also eating potato chips every few days so that is probably helping too.  Taking 100 mg of b1 along with complex. I took all thiamine maybe 100 or so tablets. Brain fog diminished some and it seems swallowing trouble also diminished. Stopped taking it couple months or so ago and did not notice any reversals. I think I will finally look into bentofothiamine. Also eat 1/2 ounce liver every morning for additional v b support.                                  
    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
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