Do I Sound Celiac? So Lost And Confused. I Need Help!

[Gamer.Girl]

Over my first year at college I developed some gastrointestinal issues that seem to be snowballing. I am at a loss as to where to go or what to do next. I am 19, 5’4” and 91 pounds. Over the course of two semesters I lost ten pounds of body weight, became horribly weak, pregnant looking, and all round miserable. So let the story begin:

 

I was diagnosed with Poly Cystic Ovarian Syndrome in July 2014. My first gynecologist put me on birth control which took care of my symptoms while I was not on the sugar pills. Once the sugar pills and my period started my life was a mess again. After continually worsening pain, I went to a reproductive endocrinologist who put me on a higher dose of estrogen which made everything so so so so so so much worse. For two weeks out of every month I had to take an Advil every four hours on the four hours or I could not function from the pain.  I stopped taking the Advil at the end of April after we switched me to continuous bc. Midway through my first semester I started to experience other problems such as extreme fatigue (I did not think I would be able to walk back to my dorm certain days or get up a flight of stairs), lack of focus (which looking back started my senior year of highschool), knee pain that would make me nearly vomit trying to walk up stairs to exit a lecture hall, and EXTREME charley horses in the middle of the night. I would wake up in so much pain that I could not scream no matter how much I wanted too. All I could do was grip my blanket and wait for it to pass. My calf would be in a knot for hours up to days after. We thought I had an electrolyte imbalance or needed more potassium so I choked down some bananas (I hate bananas with a passion) and nothing got better. In fact, I am still experiencing the cramps at night and sometimes they are in my foot during the day. I went to an orthopedic sports medicine doctor and he said nothing was wrong with my knee, no explanation for the charley horses, but he did discover I had a benign bone tumor in my left leg. It’s a non ossifying fibroma. Basically when I was growing some of the growth plate cartilage splintered off and left a hole in my tibia.

 

I managed to get off the school meal plan as I under took some dietary changes to try and ease my PCOS pain. I have a documented sensitivity to soy and peanuts from allergy testing when I was little (nothing severe other than seasonal allergies) and soy acts like estrogen in the body which aggravates conditions like PCOS. So I cut soy (all soy but soybean oil) out of my diet which meant I cut out many grains. The other thing I learned is PCOS is part metabolic and the body is insulin resistant which causes a mess of the endocrine system and hormones. People recommend eating like one is diabetic. I switched all of my cereals, breads, and grains, to soy free whole wheat products.

 

After Christmas break more issues started arising. I became slightly bloated, felt constantly dehydrated despite drinking lots of water, and I could no longer sleep through the night because I had to pee every hour. I was still on the higher dose of estrogen bc and was having pain issues with that. We suspected I had fibroids since we have a heavy family history on both sides. Come Valentine’s Day I ended up peeing my pants. Six seconds prior I had no need to use the restroom and I was in the dorm bathroom six inches away from the stall and could not make it. I called my gynecologist asking if it was a side effect and he said no. He recommended getting tested for a UTI which I did and it came back negative. He referred me to a urologist to have my kidneys and bladder checked. After some ultrasounds and urine tests the doctor told me nothing is wrong and I am perfectly normal. We followed up with the gynecologist and insisted on an MRI to check for fibroids. The MRI came back with a small fibroid but it was highlighted that I had “moderate constipation”/a buildup of stool in my digestive tract. I trudged on through the rest of the semester with increasing fatigue, anemia like symptoms, and horrible lack of focus and brain fog. Simply reading test questions became a struggle which is very new to me. I graduated second in my high school class, and I felt utterly defeated and stupid having to guess what the question was asking or wanted me to do. Walking got more exhausting and I would come back from class frequently with fevers just under 100 degrees. I found I felt better the less grains I ate.  I splurged twice. Once at spring break, my mom and I made whole wheat pizza from scratch and I felt sick to my stomach afterwards. The second time was mid April for my birthday. I made whole wheat elbow noodle mac and cheese and again felt utterly disgusting.

 

The second semester ended and coming home I was a mess. I had to quit my last year of 4H and I have spent my summer doing nothing because I have to pee every thirty minutes, I am too weak to do much of anything but sit around and feel like I am wasting my life, my farts smell so bad and I look so pregnant I am too embarrassed to go out into public. I even had to change the way I bend down to pick something up and shave my legs because I have this monster of an abdomen sticking out. I made an appointment with a GI and gave them a rundown of what I was experiencing. They decided to run some blood tests (lactose intolerance, celiac, thyroid, inflammation, and a couple others) but they chalked it up to “IBS” when everything came back negative. They told me to take a probitiotic, up my fiber and take some Miralax to ease the “constipation”. I eat nothing processed. I love my raw fruits and veggies and yogurt. I already get the recommended fiber intake if not more. I took the Miralax as prescribed and nothing. I even tried psyllium husk and nothing. Still pooped the way I “normally” had been. Not normal bowel movements but not constipation. I tried the low FODMAP diet but no success or improvement. I never noticed an association with anything that I ate and the distention getting worse.

 

 The celiac test had a disclaimer that it was for people eating a gluten containing diet (the 2-4 servings of bread or pasta a day) which I am far from. I never intentionally went gluten free but I realized after the test my diet consisted of no grain products except 20-30 rold gold thin pretzel sticks at 7 am because I like to dip the in cream cheese and cinnamon. My family lives almost exclusively off pasta and bread so I know there is lots of gluten contamination in the household as well.

My symptoms never got better, most got worse, in the following weeks. Gas got more frequent and smelly, my distention went from pregnant looking to past full term pregnant with twins, the pain got worse the fatigue got worse and I started getting blood when I wiped. More blood when I had a large bowel movement or strained too hard. My mom described it as a nose bleed that isn’t a gusher. It definitely came from inside my anus through. I decided to ask my pediatrician about it at my last wellness checkup hoping that she would be able to look at the whole picture and not just isolated chunks of my body. We gave her a print up of symptoms known at that point and showed her my pregnant looking belly and other pictures of when the distention got worse. She told me she had seen a few other cases identical to mine and the girls ended up having ovarian cysts. So she ordered a CT scan and a liver function test. I got my CT scan done and eagerly awaited the results hoping it was an ovarian cyst because easy solution: cut it out. But yet again I got the call and was told that I “am perfectly normal”. All of my organs looked normal and no sign of any inflammation but there was a buildup of stool that they diagnosed as “chronic constipation.” I’m not gonna lie I broke down and cried. How can my body be this different and miserable when I am “perfectly normal” from all of these tests I have had done? And constipation my a**. I was having #2s several times a day, and not just like marbles I had to strain and turn blue in the face to get out. I started an in depth excel spreadsheet of when I went to the bathroom, what it was, and whether there was blood when I wiped or food. I averaged 14 times a day over a month. And the blood kept increasing in amount and frequency. Never once did I have anything close to diarrhea though.

 

I looked into as many possibilities as I could even small intestinal bacterial overgrowth but whatever I tried nothing seemed to change. Changing when I ate, how much I ate at a time, what I ate (aside from my breakfast) had zero affect.

 

I went to a nutritionist in the meantime to try and figure out a way to put some weight back on me. I can see my sternum, ribs, spine, my shoulders aren’t rounded anymore just boney, I have no hips they dip in like a skeleton. It’s honestly a scary sight. I dropped 10% of my body weight within six months but the GI said 10 pounds wasn’t enough to consider substantial weight loss. The nutritionist looked at my detailed report of everything I ate and she saw no issues with it. She urged me to go back to the GI and get further tested for malabsorption disorders and celiac. She was worried that it won’t matter how many calories I pump in to gain weight if my body won’t absorb them. She also showed me the numerical results of all of my blood tests. I found out that my “perfectly normal” results included an elevated liver enzyme function test.

 

I decided to look into celiac symptoms more both digestive and other non-digestive symptoms and was shocked at how much it sounded like me. I found a detailed symptoms list and had my mom read it. I hadn’t told her what it was for but after words she read it and said oh my god this describes you completely.

 

Back to the GI I went with a more in-depth symptom list and my excel sheet tracking my bowel movements. She assumed it was diarrhea at first and I really had to explain that it wasn’t diarrhea a few times before she kind of accepted it. We also mentioned more celiac testing and the physician’s assistant explained that the first one should have worked unless I was eating less than 95% grains in my diet (no pasta breads cereals), which I currently do not eat grains, and I do not feel like she believed me. She gave me a skeptical look and kept on going saying that cystic fibrosis might be a cause. She talked to the GI doctor who ordered a colonoscopy asap along with a fecal test (which surprise surprise came back normal/negative for fat malabsorption). The GI said he did not see a need to test anymore for celiac. My colonoscopy was scheduled for July 23, two days after I revisited the GI. The next day was my prep day and the first dose of the colon prep had no effect on me what so ever. My distention got worse and I got back pain and pressure. We were hoping if it was just a build up of stool the prep would take care of it and I would go back to normal. Even after the second dose of prep nothing seemed to happen. It wasn’t until four hours after the second dose when I forced a solid bowel movement out that the prep started to work. And I mean forced, I had to get a stool to put my feet on to get the “squatty potty position.” I spent from 11 pm- 4:30 am finally “cleaning everything out”. Exhausted after a sleepless night, at 5:30 am my family drove me to the clinic to get my butt probed at 7am. After the procedure (which went without a problem) the GI explained to my parents that he did not see any signs of inflammatory bowel disease or cancer.  Nothing to explain the blood when wiping either.  He also explained that he took some biopsies to check.

 

July 31, 2015 I got the results. I was out of town and my dad called to say the GI called and I needed to call their office to get the results and referral from the nurse. The nurse told me the biopsy was “suggestive of lymphocytic colitis” and the GI sent a prescription to my pharmacy and I needed to take it and see how I feel in 3-4 weeks with a follow up visit. My mom and I, on a 3.5 hour drive home, investigated and researched my diagnosis and started scratching our heads. The major characteristic of LC is chronic watery diarrhea. I have not had diarrhea since before I started college. Not to mention the drugs they use to treat it are antidiarrheals, which I do not have diarrhea, and anti-inflammatories, which I had three tests to show I didn’t have any inflammation (CT, MRI and blood). We called my dad to have him pick up the prescription while we drove home but lo and behold no prescription was at the pharmacy. I am going to call tomorrow (Monday) to see where it was sent and what it is, but if it is the typical treatment I do not think it will help.

 

Being a scientific person (I am majoring in chemistry and chemical engineering), I decided to set up a small experiment. I saw some pure wheat gluten in the store and thought that is one factor I could add into my diet to see if I notice any changes or symptoms. I had cut so many processed carbs out that if I tried to test the gluten effects with bread or pasta, the carbs may throw my body into wack with insulin and blood sugar spikes. I like making powdered peanut butter with some marshmallow root, milk thistle, and dandelion root mixed in with a bit of stevia and cinnamon to dip celery in and taking coconut milk yogurt and mixing in cocoa powder and pea protein powder (tastes like awesome cake batter with some liquid sucralose or chocolate stevia). So the idea was to make them up in the morning and while I shower have my mom mix some of the wheat gluten in one of them (that way I wouldn’t know which one to try and account for the placebo effect, sort of blinding the experiment). Then I would eat them two to three hours apart and see if I notice any changes. The first day after eating one I started getting a headache that would change between pressure pain and sharp pain in the front part of my head about an inch above each temple (headaches are very rare for me). My distention got worse and my stomach got all gurgley and gassy (more gassy than normal). I felt a bit fluttery in my chest and dizzy/light headed. I went to bed and felt okayish the next morning. Day two I ate the first mixture and felt fine and went grocery shopping no problem. Then the second mixture I got the same symptoms thirty minutes after eating it which was about how long it took for the first day’s effects to set it. My gas felt a lot warmer and I felt a bit more nauseous in my throat. Almost like I was about to throw up but not quite. It brought back memories of my child hood and how I felt all throughout elementary school and junior high. I went to bed again and in the morning I felt constipated. I felt the need to go but couldn’t. And oh boy my cloudy urine from when I was a kid was back. I haven’t had cloudy urine since before I changed my diet to accommodate my PCOS. Then a few minutes later I felt the need to poop and it was a bit loose but still solid. It had a lot of this chicken fatty roasted peanut colored chunky floating stuff in and out of the poop along with mucous when I wiped (I remember having a lot of mucus when I pooped or farted when I was younger too and constantly asked my mom about it). My gas was even worse smelling and I had some lower abdominal pain when I woke up. I went for my morning run on the treadmill and decided to take a break halfway because I could tell I wouldn’t be able to make it through my next sprint. I needed to poop but it wasn’t an urgent dash to the bathroom. My poop was very loose, but not watery diarrhea. It was solid poop except it wasn’t formed in a shaped tube, a mushy solid but not formed. Again it had the weird chunks of stuff in it. Later this morning (8/2/2015) my mom and I noticed I have a swollen lymph node under my right armpit and my lymph node on the left side of my throat was hard feeling. I decided to try baking the gluten in a mug caked (to mimic cooking like in pizza crust or spaghetti to see if that had an effect) and 26 minutes after ingesting it, the headache started, the distention got worse, the dizziness came, my gas got smelly(er) and warm again but this time I felt a nauseous sick feeling in my stomach. I genuinely felt like how I felt all throughout elementary school and junior high. My stomach won’t stop rumbling and I feel overall gross.

 

Has anyone else experienced any of this or anything similar? I am looking for some advice or suggestions as to where to go next or what to try. Do my symptoms suggest something more like celiac?

 

I am tired of feeling like I cannot do anything with my life and just want to know how to fix what is going on with my body. I am sick of being told I am perfectly normal when I obviously am not normal.

 

Symptoms/Conditions

·         Digestive

o   Weight loss

§  102 lbs to 91 lbs from November to May

o   Abdominal distention

§  In the morning I am less puffy, but as the day progresses I look full term pregnant come bedtime. For all of my life until now my hipbones have stuck out past my stomach.

§  The night before my CT scan my distention and pain was so bad It felt like my stomach was about to detach and rip itself off of my body. I stretched out an adult medium tshirt. X-smalls are usually roomy on me.

§  A couple more instances of that extent of distention and pain occurred

§  I can no longer wear my jeans because my stomach is so puffy I cannot button them but they are falling off and baggy everywhere else

§  I even stopped wearing shorts or pajama bottoms to bed because the pressure the waistbands put on my abdomen make it too uncomfortable to sleep

o   Some abdominal and pelvic pain

§  From diaphragm down

§  Almost feels like a knot or something is constricting and twisting

o   PUTRID gas

§  People use the expression “can clear a room” but I am far beyond that. My newly adopted cat (I am a first time owner) had diarrhea one night and I was gagging at that smell… but then I farted and the cat diarrhea smell vanished.

§  My mom says it tends to smell like Indian cuisine or an Asian buffet restaurant. I describe it as a protein smell like a well-seasoned almost fried chicken.

o   Bowel Movements

§  I had a CT and MRI that showed “chronic constipation” and zero inflammation

§  But I do not feel constipated. After the CT scan saying I was “perfectly normal” but had “chronic constipation” I started tracking the number of times I had a bowel movement over a month. The average was about 14 daily. However, they were not diarrhea AT ALL.

§  The consistency varies. Sometimes they are hard and difficult to go and other times they look almost like a sea sponge with stringy veins/lines

·         I have gotten some ones when I have to stop my running in the morning to go but it isn’t an urgent crampy diarrhea feeling. It is a well it’s coming I should go to the bathroom feeling and those ones (maybe once every 10 days. A couple were in a row but not a daily occurrence) were loose and the spongiest looking

§  Large amounts of chunks of undigested food appear consistently as well

§  Some of the chunks look like baked chicken fat that is the color of a roasted peanut

§  Mucus in stool and farts

·         This is making me cringe writing this as I had the most difficult time asking my mom to go to the doctor for my reproductive issues and find reproductive things icky but the mucus looks like clear thin slimey watery snot or cervical/vaginal discharge

§  Stool is narrow

o   Frequent urination

§  Sometimes I leak when I fart because of the pressure

§  Currently I am up three times a night to use the bathroom. I do not sleep more than two hours at a time

o   Constantly thirsty/ dehydrated feeling

§  I drink probably 2-3x as much as is recommended to drink. Water and herbal tea only

o   Major salt cravings

o   Elevated liver function test results

·         Other

o   Ever since I can remember I have had poor coordination. I am athletic but I always find myself misjudging the distance between myself and doorknobs, doors, walls and corners and smack into them with my hip, elbow, knee, head, etc

o   Plantar fasciitis in both ankles during summer gym 2013

o   Knee pain last half of first college semester

o   Non ossifying fibroma

o   Leg and foot cramps/Charley Horses

o   Elbow rash

§  During the weekdays at college I developed an eczema looking rash on my inner elbows. It would go away during the weekend. The water was awful at college and I have very sensitive skin. So, I thought it went away from not showering on the weekends (go ahead and ew. I was ewing at myself too but our dorm showers were coated with black mold) but I also realized I went from eating whole wheat cereal for breakfast to oatmeal on the weekends. Plus, I changed up my lunches from a sandwich with whole wheat sprouted bread to a nongrain meal.

o   Low grade fevers

o   I experience ear pain on and off. Not inner ear but more around where the lobe attaches to the ear. It is inbetween a throbbing and stabbing pain

o   Dark under eye circles

o   Back pain/pressure under my right shoulder blade adjacent to my spine (typically starts around 4-5pm and gets worse until the next morning)

o   Always cold feeling

§  As in I could use my hands to chill beverages

§  Sometimes my fingers and toes would get numb feeling

§  But seriously I am always cold. It’s 85 degrees out and I’m wearing pants and a jacket

o   Severe fatigue

§  There are days when walking up the stairs is enough to need a break or carrying my laundry basket or even walking from one room to the next

o   Anemic like symptoms

§  We thought it was from cutting red meat out of my diet due to the PCOS. So I started an iron supplement and a B vitamin supplement which helped a smidge

o   Sharp pangs about four inches diagonally below my belly button to the right

·         Reproductive

o   I was always behind the growth curve until I hit puberty at fourteen and a half. The doctors were *hopeful* I would be 5’ but I am 5’4”

o   The end of July 2014 I was diagnosed with PCOS

§  My periods became oddly erratic and increasingly painful. I would experience mini microblackouts from super sharp pains around where my ovaries are randomly throughout the month several times a day. My cycles would go from 28 days to 24 to 35 back to 26 then up to 40. At first they were not painful and were relatively light, but the last two-three years they would be so painful I would curl up and not be able to do anything. The pain was such an intense gut wrenching awfulness I wish I would have thrown up.

§  I would also get this pain that would start in my right pelvic area and it would radiate down my leg all the way into my foot. Not quite a muscle cramp but sort of along that line.

o   Family history of fibroids

·         Behavioral

o   I have always been very grouchy, pissy and set off by the smallest things. Even if I know I do not want to be angry or upset it just happens. I feel like I cannot control the outbursts; that they hit me and no matter how much I know it is wrong to be acting the way I am (My mom has thought I might be bipolar) Typically I am fairly chill and do not like conflict but when I get into an episode I snap and turn into a crazy monster for the duration and I hate it

o   I started randomly crying (bursting out in to tears and hysterics) during college. For 18 years of my life I had never been this emotional.

o   Drastic mood swings

o   Borderline depression and difficulty coping- even with small issues

o   I recently started getting panic attacks

o   I feel obsessive and constantly “on edge” and not quite myself

o   Over the last sixth months I have become EXTREMELY hyper sensitive to noise. I get up every day at 5:30am to avoid having anyone else in the house be up. There was one day I slept in and when I woke up even though my family was only making average noise amounts (talking and eating and TV) it was WAY too much for me. I flipped out crying and wanted to stab scissors in my ears to make it go away.

o   Brain fog

§  I stopped driving for a good chunk of the summer because I am so out of it and got worried that I would kill someone

§  Grocery store decision making- I cannot FOR THE LIFE OF ME make simple decisions anymore. I will go to the grocery store with a list know what I want to buy and what brand I buy and still manage to spend 30+ minutes piddling around sidetracked and zoned out

§  Focusing to read has become difficult, especially for taking tests

·         Family History

o   Fibroids- both sides

o   Lactose intolerance- mother’s side

o   Thyroid diseases- father’s side

o   Diabetes type I and II – mother’s side

·         My Childhood

o   As mentioned above I was below the growth curve (ALWAYS the shortest in the class and I hated it!) and very thin. My puberty was late too

o   My mom told me I always had a stomach ache or upset stomach and we could never figure out why

o   Very sensitive skin

§  I would break out in full body hives if we did not double rinse our laundry

§  Rashes were common

o   I would experience “ice pick headaches”

o   One thing I remember is cookie cake would always send me to the nurse with a very upset stomach and feeling of near vomiting

o   When I was cleaning out my room one day I found a paper probably from early junior high labeled “My Symptoms” which lists:

§  “Stomach ache

§  Back pain

§  Mucosish membrane thing in poo

§  Feeling tired/weak

§  Sometimes cloudy pee (like heavy dust mixed in)

§  Weird feeling in throat

§  Tenseness in lower belly

§  Feeling to hot or cold     ( ßah the usage errors lol) followed by pain in lower belly area

§  Hard to poop but poo is not always hard

§  Feeling bloatedish and gassy

§  Sometimes headaches above right eye at hair lineish area

§  Pain in underside of feet

§  Tense hard throat sometimes pain in lower

§  Pain in mid to lower rib

§  Feeling diarrheaish but no diarrhea

§  VERY gassy”

o   My cloudy urine constantly had me worried. I remember I kept asking my mom to come look at it (the suffering I put her through)

o   I slept a sh*t ton.

§  I’m not talking normal teenage sleeping in either

§  I would sleep for 18+ hours

o   I would get a yearly “plague” as I called it

§  I’d miss school for a week, run 104 degree fevers, vomit, diarrhea, you name it. It sucked.

§  This went on every year K-11 around the same time of year every time

·         One year the doctor told me I had mono that wasn’t mono. I had a virus that mimicked it. I slept 22 hrs then got up for 2 and slept for another day

[cyclinglady]

Welcome!

I think you need to get copies of all your medical records. You may have had just a celiac screening (TTG and IGA deficiency tests). A complete celiac panel may be in order. In my case, I was only positive one one of the DGPs. Had my GI ordered the celiac disease screening tests, my diagnosis might have been missed.

You are your best health advocate. Do not give up! Something is wrong!

[Maddi]

I'm sorry you're feeling so miserable and I don't have much to say as I'm on the same boat. I basically feel and have EVERYTHING you're feeling except for the eczema and PCOS. I was 100lbs in December and I'm now down to 95 lbs and I'm 5'2 but I've never been this skinny! ): I also have undigested food in my stools. Know that you're not alone. And like you I wasn't eating much gluten when I had the Celiac test (not even everyday!) And well I tested negative. I'm going to get tested again tomorrow. You should definitely eliminate gluten from your diet if you feel that it makes you sick. Also look into other common food intolerances like dairy. Talk to your doctor maybe they'll agree to do an endoscopy to check for celiac or inflammation. Don't give up. I know it's hard bc sometimes I feel defeated especially being young and feeling so sick. Hope you get your answers soon!

[Gamer.Girl]

Welcome!

I think you need to get copies of all your medical records. You may have had just a celiac screening (TTG and IGA deficiency tests). A complete celiac panel may be in order. In my case, I was only positive one one of the DGPs. Had my GI ordered the celiac disease screening tests, my diagnosis might have been missed.

You are your best health advocate. Do not give up! Something is wrong!

I just checked what my nutritionist let me see. It shows I was tested using a Celiac Sero Cascade Immunoglobin A (IgA) and a TTG AB IGA. Can you remember what the other tests you had done were called and what they tested for? When I checked that, I took a look at my other results and noticed that my RBC count was low, making me an anemic. I had been taking an iron supplement and a multitude of B vitamins before the test too. Is anemia another symptom of celiac?

 

Also, thank you everyone for the support and encouragement!

[cyclinglady]

Here are all the tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Anemia was pretty much my only symptom at the time of my diagnosis. I guess it was overlooked because 1) I am a woman and 2) I have Thalassemia which is a genetic anemia. "Hemoglobin low? Must be your Thalassemia. Your periods must be heavy." My ferritin (iron stores) would go up and down based on my taking iron supplements. GI doc caught my iron-defiency anemia when I went through menopause. He guessed celiac disease. Luckily, he ordered a complete panel. I have discovered that those family members who have been tested for celiac disease since my diagnosis have NOT had the complete panel. My doc is recommending they get the complete panel especially since my TTG was negative. It is odd, but possible to have a negative TTg but still have celiac disease.

The other test you took just insures that the TTG IGA test is valid.

[MomBTired]

Uh wow, wish my son was this detailed. If he was going to share his story, it would simply be, "life sucks!" So my 20 yr old has Celiac Disease. He went years of going through gastro problems, many MANY scopes and not until 2 years ago, did he come up positive for Celiac. He was first diagnosed from a skin biopsy that ended up being dermatitis herpetiformis. The gastro doctor didn't believe that so told him to not stop eating gluten until he was scoped again. The night before the scope, our entire meal was gluten. He was so swollen inside that the scope scratched him a little.

 

Of course, him being male, he doesn't have all the girly stuff, but he went through years of gastric tube clean outs because he was impacted all the time. It was so bad that his colon was removed after a test showed that the nerves were not functioning in his colon. He also has Hashimoto's Disease so that makes him up to 3 autoimmune diseases. They like to hang together. Now with Celiac and more severe with not having a colon, vitamin deficiencies. Several years ago, he was diagnosed with Fibromyalgia, which he doesn't have since this January he was diagnosed with Small Fiber Neuropathy from a nerve biopsy. Just last week he was diagnosed with POTS and Autonomic Neuropathy.

 

Now with this all being said and not sure I read all you put up there very well, but I don't think I saw that you were tested for Vitamin D deficincy. I also would get your butt (pun intended) to a neurologist. All my son's gastro problems were nerve related other than the Celiac. Because he doesn't have a colon, he doesn't react in his gastro system, he gets blisters.

 

He gets painful Charlie horses in abnormal locations, but the feet can be very bad. You are getting up so much to pee because you are drinking so much. I'm a waterholic and get up at least twice a night. Love my water! And all that bowel stuff, sounds like what he went through when he was constipated at the beginning.

 

I would recommend a neurologist consult

 

[Gamer.Girl]

At this point I feel like a medical anomaly. My doctors told me I'm an unusual case of polycystic ovaries as well. I wouldn't be too surprised if I am part of the select false negative.

 

Do you know how much gluten one would have to ingest and for how long in order to have accurate test results in blood serology and in biopsy? 

 

Thank you for the information on the other types of tests!

 

[Gamer.Girl]

Uh wow, wish my son was this detailed. If he was going to share his story, it would simply be, "life sucks!" So my 20 yr old has Celiac Disease. He went years of going through gastro problems, many MANY scopes and not until 2 years ago, did he come up positive for Celiac. He was first diagnosed from a skin biopsy that ended up being dermatitis herpetiformis. The gastro doctor didn't believe that so told him to not stop eating gluten until he was scoped again. The night before the scope, our entire meal was gluten. He was so swollen inside that the scope scratched him a little.

 

Of course, him being male, he doesn't have all the girly stuff, but he went through years of gastric tube clean outs because he was impacted all the time. It was so bad that his colon was removed after a test showed that the nerves were not functioning in his colon. He also has Hashimoto's Disease so that makes him up to 3 autoimmune diseases. They like to hang together. Now with Celiac and more severe with not having a colon, vitamin deficiencies. Several years ago, he was diagnosed with Fibromyalgia, which he doesn't have since this January he was diagnosed with Small Fiber Neuropathy from a nerve biopsy. Just last week he was diagnosed with POTS and Autonomic Neuropathy.

 

Now with this all being said and not sure I read all you put up there very well, but I don't think I saw that you were tested for Vitamin D deficincy. I also would get your butt (pun intended) to a neurologist. All my son's gastro problems were nerve related other than the Celiac. Because he doesn't have a colon, he doesn't react in his gastro system, he gets blisters.

 

He gets painful Charlie horses in abnormal locations, but the feet can be very bad. You are getting up so much to pee because you are drinking so much. I'm a waterholic and get up at least twice a night. Love my water! And all that bowel stuff, sounds like what he went through when he was constipated at the beginning.

 

I would recommend a neurologist consult

My gynecologist had my vitamin D levels tested but we never heard back about the results. To be honest that test had slipped to the back of my mind. I will call their office tomorrow to see what the results were. I take a multi-vitamin daily and a caclium supplement fortified with vitamin D so I am unsure if that will affect results of what my body is absorbing.

 

I find it very odd that even though I am drinking 17 8oz glasses of water, I STILL feel thirsty all of the time. I will have to look and see if there are any neurologists in my area. I feel like there are so many "pieces" to what is going on with me and all of the specialists are only looking at their area, not the whole picture.

 

Another thing I forgot to mention is my blood pressure is crazy low. At the last three appointments I had, it was around 70/44.

 

Did your son have the blood serology tests done before he was diagnosed? I am wondering if my biopsy that was suggestive of lymphocitic colitis is a precursor to Celiac, or that the damage has not gotten that far yet. The more I read and research, the more I feel that my results will not be accurate due to the lack of even a moderate amount of gluten in my diet. Do you know how many biopsies they took and what areas they took them from? My GI did not mention specifically how many he took and where from. I have a phone call scheduled with him tomorrow to ask questions. I would have preferred to have an in-person appointment but it seems every doctor is booked out a month or more. :/

 

Thank you for sharing your son's story and your suggestions. I really appreciate all the help I can get!

 

If anyone has suggestions on questions to ask my doctor in the phone call, I would greatly take the advice. I want to be sure I am asking the right questions to get to the bottom of what is going on.

[cyclinglady]

At this point I feel like a medical anomaly. My doctors told me I'm an unusual case of polycystic ovaries as well. I wouldn't be too surprised if I am part of the select false negative.

 

Do you know how much gluten one would have to ingest and for how long in order to have accurate test results in blood serology and in biopsy? 

 

Thank you for the information on the other types of tests!

Here is a link to the University of Chicago regarding a gluten challenge:

Open Original Shared Link

[Maddi]

You should probably get your adrenals checked. Adrenal problems are known to cause fatigue and low blood pressure. Go see an endocrinologist.

[MomBTired]

No, he was first diagnosed with the skin biopsy. He has an autoimmune skin disease that can come along with Celiac. So after that he had the scope and bloodwork. I don't know how many biopsies he had. Probably just one since he was so swollen. All the other tests were positive. He does black out due to his blood pressure dropping when he stands. He was diagnosed with POTS last week after having a tilt table test. As little as you eat and how much you have stools could lead to dehydration which would make you thirsty and crave salt. My son can't keep up with water and salt since he doesn't have a colon. You are ity bity, wouldn't take much.

[Gamer.Girl]

Here is a link to the University of Chicago regarding a gluten challenge:

Open Original Shared Link

Thank you for the link!

[Gamer.Girl]

No, he was first diagnosed with the skin biopsy. He has an autoimmune skin disease that can come along with Celiac. So after that he had the scope and bloodwork. I don't know how many biopsies he had. Probably just one since he was so swollen. All the other tests were positive. He does black out due to his blood pressure dropping when he stands. He was diagnosed with POTS last week after having a tilt table test. As little as you eat and how much you have stools could lead to dehydration which would make you thirsty and crave salt. My son can't keep up with water and salt since he doesn't have a colon. You are ity bity, wouldn't take much.

Did he ever get mouth sores? After four days of adding gluten back in, I got a mouth sore last night. I noticed it when I was brushing my teeth. I remember having them all of the time when I was young young and up through highschool. They ranged in size from pencil erasers to quarters and usually would show up on my inner cheeks and lips. I always thought they were dead patches of skin because they were a bit of a whitish flesh color. Sometimes they would have a bloody taste if i chewed the layer off (ew right?) or a liquid would come out of them.

 

I probably need to clarify how much I eat (I do not want anyone to think I am starving myself). The 20 pretzel sticks with cream cheese are one of my many breakfasts. I tend to have three or four of every meal. The pretzels are first breakfast with apple slices next. By the time my family gets up I am usually on to "third breakfast," and I will have a fourth after that. I think, quantity wise, I eat more now than I ever have. I feel like I spend the majority of my day eating or preparing food. I typically eat every hour. Yet my weight continues to drop.

 

Sorry for the barrage of questions, but do you have any tips on handling the dehydration and electrolyte balances? I'm hoping there might be a better solution than dumping salt in all of my meals. I have gone through atleast four salt grinders by myself in the last two months.

 

I called the office about my vitamin D test and they said my results were normal at 50.6 and the normal range being 30-100. I know most vitamins taken orally are passed through urination, but through suppplements alone I am getting 225% DV along with a bit more from almond milk and yogurt.

[Gamer.Girl]

Has anyone heard of the medication Entocort or had any experience with it? My GI prescribed it for my "suggestive lymphocytic colitis" and the only bit of information I have been able to gather is it is an anti-inflammatory and an immunosuppressant.

 

I am not sure why I would take an anti-inflammatory when three separate tests showed I had zero inflammation in my body. Plus wouldn't advil (which is an anti-inflammatory right?) have the same effect? I tried taking an advil for the pain and distention when I first got home for the summer, and it did diddly squat to help.

[MomBTired]

If I were you, I think I would get second opinions from another group of doctors in another place. It took 14 years for someone to figure out my son. Peds was so completely clueless, he had to be an adult before someone figured it out.

[Gamer.Girl]

Update time:

 

When I called the GI's office about my colonoscopy results on 7/31, the nurse told me they had sent a presciption to my pharmacy.  I was out of town but called my dad to see if he could pick it up so my mom and I could google what the medication was on our way home. When my dad got to Walmart they had no record of the prescription what so ever. They even checked the other area Walmarts and found nothing. Of course it was Friday at 4:45pm and the office stops answering calls at 4:30pm so I had to wait until Monday to call. When I called Monday, the nurse I spoke to was a bit puzzled, not alarmed or concerned though, as to where my prescription magically disappeared to and told me she couldn’t answer my questions about the medication or my diagnosis either. She told me I would have to speak with the doctor who was supposed to call me back yesterday. If they can’t keep track of my prescription can I really trust them with my test results?! ugh!

 

I really want a second opinion but the problem is finding a doctor in time. I go out of state for college in less than a week and all of the local doctors are booking out in November. Plus our *awesome* insurance will not let me see two different doctors that work in the same area. “Once you pick a doctor you have to stay with them and can’t change.” They won’t allow a general practitioner to perform routine gynecological and breast exams if the person is a patient of a gynecologist in the network. Even if they have no intention of going back to the OB/GYN because they are older and have no intention to have children again.

 

I finally got a call back from my GI this morning. He explained the biopsy results and said that in the pathologist’s report it showed I had an increased amount of lymphocytes in my epithelium and slight epithelial damage. However, those biopsies were from my colon. He mentioned he took one biopsy during the colonoscopy from my small intestine, more specifically the ileum, to check for Crohn’s and did not see any sign of Crohn’s. He didn’t seem quite as confident as I would have liked in the diagnosis of lymphocytic colitis, which is a type of microscopic colitis. From what he read off the pathologist’s report, the pathologist didn’t seem too confident either. He is going to run a 24hr fecal sample collection and a few more blood tests to check for things (the only one he mentioned specifically was for the pancreas) before I start my prescription and go back to school.

 

Does anyone know if a biopsy from the ileum would be enough to catch the villous atrophy if I had Celiac? I’m not sure which part of the small intestine the damage would be most prominent in.

 

I found a couple articles discussing the microscopic colitises and connections with celiac.

 

https://www.celiac.com/articles/22830/1/Is-There-a-Connection-Between-Celiac-Disease-and-Inflammatory-Bowel-Disease-/Page1.html

 

https://www.celiac.com/articles/22610/1/High-Rates-of-Microscopic-Colitis-in-Celiac-Disease-Especially-Among-Middle-Aged-Women/Page1.htm

 

I forgot which one, but one of those is the second or third article I read saying 40% of those with microscopic colitis also have Celiac. Does anybody have any thoughts about the articles? I feel like I’m probably driving my mom insane sending her emails up to three times a day with four different links asking her to read anything from webmd to medical research papers and asking her what she thinks of them. She’s a saint for putting up with me But it is always nice to hear a different view from someone with a different perspective to consider things I might have looked over.

[Gamer.Girl]

If I were you, I think I would get second opinions from another group of doctors in another place. It took 14 years for someone to figure out my son. Peds was so completely clueless, he had to be an adult before someone figured it out.

I agree!!! It seems my GI is clueless too!!!!

 

Mini-rant time. I was able to find another GI who has an opening three days before my classes start but since I’ve seen another GI in the last year, she needs to review all of my medical records and case before she makes a decision to take me as a patient or not. I had to get my records myself to send to the new GI because if the old GI sent them they would end up dismissing me as a patient and the new GI’s office did not want that just in case.

 

So I got my records and read over them. Holy crap!!!!!! Everything is WRONG WRONG WRONG! At my last visit I told them about my bowel frequency and they assumed I had diarrhea, and I remember at least three instances of bluntly correcting them saying “No. I do not have and have not had diarrhea what so ever.” I really made it a point to let them know I did not have diarrhea. What did they have documented in the “Patient’s Current Health Condition” section of my visit? Chronic Diarrhea: Patient is reporting 10-15 bouts of diarrhea per day. They go on to list that I have diarrhea in quite a few more places too. I had a feeling they were not listening to me, and I guess I was right. They also documented answers to questions they never asked me. Of course they were the opposite of what I would have answered too.

 

Plus! I looked at my ESR Sed Rate test and my “normal result” was actually above the normal range. My fecal lactoferrin test came back negative. Honestly I had no idea what the tests were for so I looked them up and from labtestsonline.org (no plagiarism for me today) found:

 

“Lactoferrin is a stool (fecal) test that is used to detect inflammation in the intestines. Intestinal inflammation is associated with, for example, some bacterial infections and, in people with inflammatory bowel disease (IBD), it is associated with disease activity and severity. The test may be ordered to distinguish between IBD and non-inflammatory disorders and to monitor IBD disease activity.

 

A doctor may order a lactoferrin test to help investigate the cause of a person’s persistent watery or bloody diarrhea. ”

“The erythrocyte sedimentation rate (ESR or sed rate) is a relatively simple, inexpensive, non-specific test that has been used for many years to help detect inflammation associated with conditions such as infections, cancers, and autoimmune diseases.”

 

Does anybody listen or care??! Why did they tell me all of these tests came back normal when this is the fourth one that ended up being not normal?? How can they accurately diagnose me when they can't properly document what is ailing me?!

Rant done

 

I hope the new GI I found decides to take me as a patient! 

[cyclinglady]

I think you still need to find another GI doctor who can order a complete celiac panel and you need to be consuming gluten in order for the tests to be accurate. I know you are upset that your GI documented that you had diarrhea. Lots of doctors are forced to alter the symptoms in order to get insurance to pay for procedures. My own GI wrote that I had diarrhea. I had no abdominal issues and just suffered from anemia. Still, in order for my doctor to get approval for the endoscopy (was scheduled for a screening colonoscopy because I am over 50), he had to put down classic celiac symptoms. Is this wrong? Sure, but his first obligation is to protect his patients. It is a shame that insurance dictates so much!

The ESR rate could be elevated for a number of reasons but since your other results are normal, your doctor probably did not worry about it. For example, my b-12 levels are through the roof. If I search, most medical sites will mention liver disease or cancer. I do not have those diseases. Nor do I take b12 supplements. Am I going to worry about it? No because I have kept all my medical records and it has always been high (20+ years).

Just something to think about. Focus on getting a second opinion even if you have to do it without insurance. I bet you pay more for student parking or books! It can be well worth it!

[Gamer.Girl]

I think you still need to find another GI doctor who can order a complete celiac panel and you need to be consuming gluten in order for the tests to be accurate. I know you are upset that your GI documented that you had diarrhea. Lots of doctors are forced to alter the symptoms in order to get insurance to pay for procedures. My own GI wrote that I had diarrhea. I had no abdominal issues and just suffered from anemia. Still, in order for my doctor to get approval for the endoscopy (was scheduled for a screening colonoscopy because I am over 50), he had to put down classic celiac symptoms. Is this wrong? Sure, but his first obligation is to protect his patients. It is a shame that insurance dictates so much!

The ESR rate could be elevated for a number of reasons but since your other results are normal, your doctor probably did not worry about it. For example, my b-12 levels are through the roof. If I search, most medical sites will mention liver disease or cancer. I do not have those diseases. Nor do I take b12 supplements. Am I going to worry about it? No because I have kept all my medical records and it has always been high (20+ years).

Just something to think about. Focus on getting a second opinion even if you have to do it without insurance. I bet you pay more for student parking or books! It can be well worth it!

I fully understand where you are coming from. When I had my MRI done, my gynecologist had to order it with fibroids even though I was not diagnosed with them at the time. However, this goes beyond protecting the patient to deal with insurance. Where they had the incorrect information recorded was on a document that never got sent to insurance or for any testing. At this office the doctors are so busy, they have physician's assistants to meet with the patients and record symptoms which they document and talk to the doctor about later. The GI himself has not sat down to discuss my symptoms with me. I guess that should have been a giant red flag. That and they diagnosed IBS before they did any testing.

 

My mom mentioned trying an allergist if I am unable to meet with a new GI.

 

Regardless of whether or not I can see the new GI I found, I do not plan on going back to my current one. Instead of waiting until after my 3-4 week follow up (which realistically would be October with college), he decided to order more tests now, before I start my prescription, just in case it does not help. I had to do a 24 hr fecal collection for a quantitative fat analysis (side note: super gross), a random stool collection for pancreatic function I believe, and then a blood test for pancreatic function (I think, but I will double check the order later). The odd thing was the nurse who called about the tests he ordered, said he directed me to take 20mg of prilosec two days before collection and during the collection. I asked the nurse why and she couldn’t give me an answer. She said she had never heard of that being directed before. When we stopped by the lab to pick up the test kits, I asked the lab worker if she heard of doctor’s ordering the prilosec for the stool collection. She hadn’t either. Then when I stopped by to pick up my records, I asked the nurse at the GI office again and she said she hadn’t heard anything from the doctor, but she got curious as to why too. She said she would ask him and call me when she found out since the GI was busy with procedures at the time. Not including the weekend, it has been about two working days and still no answer.

 

I googled fecal fat test and prilosec, nothing. I searched fecal fat test and proton pump inhibitors, again nothing. My mom searched for any reason and she came up with nothing too. Then one morning out of the blue I decided to search for prilosec (and proton pump inhibitors) and IBD. Bam. Results this time. However, not good ones. The articles, research papers, and studies that I found all pointed to an association of IBD, more specifically microscopic colitis, and proton pump inhibitor use. I also found the medication was known to cause flare ups of IBD in patients who were in remission and cause onsets of diarrhea in patients with the microscopic colitis. Even without causing diarrhea the proton pump inhibitors were linked to an increase of lymphocytes in the epithelium for those with lymphocytic colitis.

 

Without reasoning from the doctor and this being the only information I have to go off of, I feel like he is trying to sabotage my well-being! Ugh!