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Help! Do My Symptoms Seem Similar To Celiac?


baffledportrait

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baffledportrait Newbie

Hello all!

I am so glad to have found this forum, it has provided me with a lot of information concerning celiac. I just have a few questions and am in need of advice. I have been having rather horrid bouts of illness for the past 5 years or so and its getting a bit out of control. My symptoms include (sorry if this is a bit graphic): frequent diarrhea, severe cramping, chills and uncontrollable shaking with my crampy diarrhea, random bouts of constipation, a wide array of stool types (loose, watery, mucousy) rather fowl smelling stools, constant fatigue, and constant stomach aches. I usually have to use the restroom within 30 minutes of eating. I often find myself dreading mealtime because I know that I will soon be in the bathroom cold, shaking, and hurting. This really takes a lot out of me and I honestly don't know how much longer I can deal with it. I am only 22 years old, in grad school, working full time, and have a 14 month old. I cannot go running to the bathroom 5-6 times a day for prolonged periods of time :( I do notice that this happens more so after I eat meals like pastas and snacks such as pastries. My diet is not completely horrible, I do snack on fruits daily and eat vegetables every night with dinner. When I was 19, I was having rectal bleeding and had a change in my bowel movements. I had a colonoscopy done and a polyp was removed (it was benign). Even after the polyp was removed I continued to have the same symptoms (minus the rectal bleeding). I have been though so many doctors my head is spinning...yet none have tested me for celiac! Now my questions are: do my symptoms seem similar to anyone here that has celiac? and also, should I ask my doctor to test me for celiac?

On another note, my mother also has some of the same symptoms, the diarrhea and cramping, and she also has a rash on her hands that looks extremely similar to the dermatitis rash that people with celiac often get. Her doctor is at a loss of what it is (but has not done a biopsy) and none of the medicine he has put her on is working. Should she also ask to be tested for celiac?

Thanks so much for all your help in advance!


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aorona Rookie

Sounds like celiac. I would definitely be tested just to rule this out. Also, if after being tested (if you come out negative) and you still suspect celiac, you can always do a gluten [eating] challenge.

jerseyangel Proficient

Hi and welcome :)

Celiac is possible--I would suggest asking your doctor to run the Celiac Panel, which consists of these tests--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

If you choose to be tested, you need to be eating a full on gluten diet--don't attempt to go gluten-free or gluten lite beforehand or you will skew the results.

And yes--take your mom with you ;)

baffledportrait Newbie

Thanks for your feedback! I am usually a bit shy at asking doctors to test for things that I think I may have but, I am going to be persistent with this. I'm tired of feeling crappy all of the time. I always feared that it would be so difficult to find food if I do turn out to be celiac but, I am very glad to see that there are many people living gluten-free with little problem!

jerseyangel Proficient
Thanks for your feedback! I am usually a bit shy at asking doctors to test for things that I think I may have but, I am going to be persistent with this. I'm tired of feeling crappy all of the time. I always feared that it would be so difficult to find food if I do turn out to be celiac but, I am very glad to see that there are many people living gluten-free with little problem!

Yes, you will need to bring it up because most doctors won't. Take the list I gave you to make sure that all the tests are run--you'd be surprised at the number of people who have reported that their doctors only ran one or two of them. This happened to my mother--after I printed out the panel for her to take to the doctor :angry:

The diet is not all that hard--it takes some getting used to at the beginning, and then pretty soon it becomes second nature. There are lots of things we can eat--both naturally gluten-free foods and specialty things like baking mixes and gluten-free baked goods.

Best of luck at the doctor--please let us know how you do and let us know if there's anything we can help with.

Stevs Newbie
Yes, you will need to bring it up because most doctors won't. Take the list I gave you to make sure that all the tests are run--you'd be surprised at the number of people who have reported that their doctors only ran one or two of them. This happened to my mother--after I printed out the panel for her to take to the doctor :angry:

The diet is not all that hard--it takes some getting used to at the beginning, and then pretty soon it becomes second nature. There are lots of things we can eat--both naturally gluten-free foods and specialty things like baking mixes and gluten-free baked goods.

Best of luck at the doctor--please let us know how you do and let us know if there's anything we can help with.

Hi, my name is Steve.. I have not been diagnosed as Celiac but am wondering if it could be part of my problems. I have been confronting a lot of symptoms that I have been reading about from others. Thirty years ago I had a slight dull pain under the lower right rib cage. When I would eat food or drink things I would get a funny taste in my mouth. They might call that a furry tongue feeling not sure. Anyway this would come and go didn't really hurt or anything. I also developed an ulcer eventually which I learned to help heal. All the time the doctors were giving me medicines and it didn't seem to be helping. I ate more times during the day, smaller meals and it would seem to help, but I kept getting that I need to put something in my stomach feeling when I would get that dull ache again. I gained a lot of weight going from 138 up to about 215 over this thirty year time frame. I have had my gallbladder removed doctors thinking that that was the problem. Felt better for two weeks and then started getting those feelings again. Doctors thought I had acid reflux, which there was a little at the time. Two years ago I went through a surgery called Nissen. This was to fix a hiatal hernia below my breast bone. Included in this surgery was a full wrap of the top part of my stomach so it would not allow the hernia or acid reflux to be a problem anymore. The last year and a half since the surgery I felt ok but had occasional problems such as feeling like I had to vomit when I first would swallow some food, but if I would wait a little while that feeling would go away. I also felt full more sooner than normal when eating. Didn't think to much at this time. I am a math teacher at a middle school and the last two months of school this year I was feeling pretty good. I was even eating oranges and drinking some Dr. Pepper which has been a No No for me over many years. When the month of June arrived This is when I noticed some changes. I kept getting a grumbling or growling feeling in my digestive system, so I tried the eat more times during the day. I became very restless couldn't

fall asleep at night was only getting about one to two hours of sleep. ( I normally over many years got about five) Anyway things didn't get better so I went and the Dr. had a CT scan done of my lower abdomen, found that I had one kidney stone on each side. They told me to screen to see if they would come through. They also ran a scope in my esophagus and stomach to make sure that there wasn't an ulcer and that the surgery they had done on my hernia and stomach wrap were ok. Stomach and esophagus a little red, biopsy negative. I also had a sleep study test done that was requested by the Dr. ( I have a deviated septum in my nose) Turns out they don't think I need a breathing machine, getting enough oxygen I guess. I have been breathing through my my and a little through my nose for about 30 years also. Dr. thought I might have IBS and put me on some pills to settle my digestive system down You now have my history and are up to date as to what is happening. I will list my symptoms as I could have a few things going on at the same time, but there are many symptoms that are the same for so many illnesses. Blood work that they did said that my kidneys and liver were functioning well and no thyroid problems. They also ruled out diabetes A1C was 5.8. I wonder about celiac, lyme, or possibly mold. We had a water problem many years back and have noticed a little molding in the bathroom. Many of the symptoms were before the water damage though. I am do this April of 2009 to have a colonoscopy done a three year follow up. I had a few non cancerous polyps and hemoroids removed. Anybody heard of a leaky gut or intestine, could this maybe one of a few things that could be going on. I really don't drink a lot of liquids as it seems to bother my digetive system with the grumbling.

Symptoms I have been experiencing: Insomnia ( taking pills to try to help this) ringing in both ears ( have ordered

something called bio ears to try to help this) dry mouth but not really thirsty. furry tongue feeling ( thrush maybe), some difficulty swallowing at times, very fatigued, headaches, some shortness of breath at times. ( If I cough seems to relieve that some)( not overly bothersome) I have a burning sensation in the area of my navel going across my abdomen. Just a little cramping in lower abdomen at times. intolerance to heat, sweats, sometimes when I eat or even if I am just sitting in my house I feel hot and start sweating on the forehead , I have pains in the back lower area below my rib cages and radiates toward the lower abdomen. Some shakiness at times in my hands. ( Not anemia according to tests ) I am 52 could be a male hormonal problem with the sweats?) bowel movements sometimes bulky light colored, other times I get an urgent feeling to hurry to the stool and it is very loose warm to hot feeling and diahrea like. feeling like bloating or something pushing up in my abdominal area below my right rib cage.

I sometimes think that the oranges and Dr. Pepper set this all off, but have not found any luck in feeling better yet. Sorry, I know this was long but it seems like things have just been building up in me over a number of years. Any thoughts out there.

Let me know what you think, maybe the blood testing for celiac, lyme, and mold. Possibly a scan or x-rays of my abdominal area.

E-mail sheinert@tcsdk12.org

Thanks

Steve H.

Stevs Newbie

Hi, my name is Steve.. I have not been diagnosed as Celiac but am wondering if it could be part of my problems. I have been confronting a lot of symptoms that I have been reading about from others. Thirty years ago I had a slight dull pain under the lower right rib cage. When I would eat food or drink things I would get a funny taste in my mouth. They might call that a furry tongue feeling not sure. Anyway this would come and go didn't really hurt or anything. I also developed an ulcer eventually which I learned to help heal. All the time the doctors were giving me medicines and it didn't seem to be helping. I ate more times during the day, smaller meals and it would seem to help, but I kept getting that I need to put something in my stomach feeling when I would get that dull ache again. I gained a lot of weight going from 138 up to about 215 over this thirty year time frame. I have had my gallbladder removed doctors thinking that that was the problem. Felt better for two weeks and then started getting those feelings again. Doctors thought I had acid reflux, which there was a little at the time. Two years ago I went through a surgery called Nissen. This was to fix a hiatal hernia below my breast bone. Included in this surgery was a full wrap of the top part of my stomach so it would not allow the hernia or acid reflux to be a problem anymore. The last year and a half since the surgery I felt ok but had occasional problems such as feeling like I had to vomit when I first would swallow some food, but if I would wait a little while that feeling would go away. I also felt full more sooner than normal when eating. Didn't think to much at this time. I am a math teacher at a middle school and the last two months of school this year I was feeling pretty good. I was even eating oranges and drinking some Dr. Pepper which has been a No No for me over many years. When the month of June arrived This is when I noticed some changes. I kept getting a grumbling or growling feeling in my digestive system, so I tried the eat more times during the day. I became very restless couldn't

fall asleep at night was only getting about one to two hours of sleep. ( I normally over many years got about five) Anyway things didn't get better so I went and the Dr. had a CT scan done of my lower abdomen, found that I had one kidney stone on each side. They told me to screen to see if they would come through. They also ran a scope in my esophagus and stomach to make sure that there wasn't an ulcer and that the surgery they had done on my hernia and stomach wrap were ok. Stomach and esophagus a little red, biopsy negative. I also had a sleep study test done that was requested by the Dr. ( I have a deviated septum in my nose) Turns out they don't think I need a breathing machine, getting enough oxygen I guess. I have been breathing through my my and a little through my nose for about 30 years also. Dr. thought I might have IBS and put me on some pills to settle my digestive system down You now have my history and are up to date as to what is happening. I will list my symptoms as I could have a few things going on at the same time, but there are many symptoms that are the same for so many illnesses. Blood work that they did said that my kidneys and liver were functioning well and no thyroid problems. They also ruled out diabetes A1C was 5.8. I wonder about celiac, lyme, or possibly mold. We had a water problem many years back and have noticed a little molding in the bathroom. Many of the symptoms were before the water damage though. I am do this April of 2009 to have a colonoscopy done a three year follow up. I had a few non cancerous polyps and hemoroids removed. Anybody heard of a leaky gut or intestine, could this maybe one of a few things that could be going on. I really don't drink a lot of liquids as it seems to bother my digetive system with the grumbling.

Symptoms I have been experiencing: Insomnia ( taking pills to try to help this) ringing in both ears ( have ordered

something called bio ears to try to help this) dry mouth but not really thirsty. furry tongue feeling ( thrush maybe), some difficulty swallowing at times, very fatigued, headaches, some shortness of breath at times. ( If I cough seems to relieve that some)( not overly bothersome) I have a burning sensation in the area of my navel going across my abdomen. Just a little cramping in lower abdomen at times. intolerance to heat, sweats, sometimes when I eat or even if I am just sitting in my house I feel hot and start sweating on the forehead , I have pains in the back lower area below my rib cages and radiates toward the lower abdomen. Some shakiness at times in my hands. ( Not anemia according to tests ) I am 52 could be a male hormonal problem with the sweats?) bowel movements sometimes bulky light colored, other times I get an urgent feeling to hurry to the stool and it is very loose warm to hot feeling and diahrea like. feeling like bloating or something pushing up in my abdominal area below my right rib cage.

I sometimes think that the oranges and Dr. Pepper set this all off, but have not found any luck in feeling better yet. Sorry, I know this was long but it seems like things have just been building up in me over a number of years. Any thoughts out there.

Let me know what you think, maybe the blood testing for celiac, lyme, and mold. Possibly a scan or x-rays of my abdominal area.

E-mail sheinert@tcsdk12.org

Thanks

Steve H.


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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