When You Were Diagnosed

[JerryK]

I’m curious if some of you can relate what your symptoms were like before you received an official diagnoses.

Were your symptoms sporadic? Were they constant? Were you asymptomatic and was celiac disease discovered because of a non GI issue. Thanks!

[francelajoie]

I had constent symptoms for about a year. Mostly D & C. I mean, I couldn't even make a trip to the grocery store. I walked in and BOOM...I had to go big time.

At night, I looked 6 months pregnant. I was so bloated it hurt really bad.

I pretty much diagnosed myself with IBS and started taking supplements and changed started eating only "easy to diggest" food.

I moved to the states and had to find a primary care doctor. I was lucky enough to get a very young lady right out of school pretty much. I had my appointment with her and brought my supplements with me. She looked over everything and immediatly called for blood test. She called me back into her office 3 days later and said I was wheat intolorent most likely Celiac Sprue. She said either way, you have to go gluten free.

[Lisa]

I have had symptoms of IBS as long as I can remember, and that's a long time. About six years ago I lost my appetite and had no interest in food, and I lost about 20 pounds, apparently for no reason at all.

Then, through a period of high stress on the job, I developed burning D which was totally uncontrollable. I was unable to leave the house. At home, I had to get to the bathroom in five seconds and I got there in six. It was not pretty and in disgust, I through out alot of good jeans. I continued to loose weight and the fatique was unbelieveable. Finally, my Prim Dr. has no answers for me and he sent me to a gastro. guy that had the bedside manner of a dead fish and I paid he out my butt. I had an endoscopy and a colinoscopy. The scope confirmed villi damage consistant with Celiac He had no personal contact with me. His nurse pract. said that I had Celiac and they sent my on my way.

I had no instruction, or information, nothing.

I changed doctors, and had a weekly B-12 shot, that worked miracles for my energy. I am pretty much ok now, but I do have ups and down. One day I feel good, another no so good. I am in control of the D and can live a real life now.

Thank goodness I found this site. I truely do not know what I would do without everyone here. If I have never thanks each of you, I do now.

Thats my story in a nut shell.

Lisa

[jerseyangel]

In the 4-5 months prior to my diagnosis, my Celiac symptoms kicked in big-time. I had urgent (like 30 seconds to get to a bathroom) and explosive D, brusing all over my arms, worsening anemia (hemi-8.5), neuropathy in my face, arm, legs and feet, nausea, weight loss, dizziness and depression. I was pretty scared--I had symptoms for many years, but nothing like this all at once. I was getting nowhere fast with my doctor--she ordered blood and stool tests , and said it was "probably Chron's". Luckily, I had begun to do a little research on my own, based on the fact that an alternative practioner had told me I should not eat wheat, oats, barley, rye and a few other foods. I came across Celiac Disease, and my symptoms magically fit. I asked for a referral to a gastro and asked him point blank if I might have a problem with gluten. I was lucky, in that he agreed that it could be Celiac. I had my biopsy a month later. It took 20 years, Eastern Medicine, Western Medicine, and a lot of misdiagnosis to finally get my diagnosis!

[Katie O'Rourke]

  JerryK said:

I’m curious if some of you can relate what your symptoms were like before you received an official diagnoses.

Were your symptoms sporadic? Were they constant? Were you asymptomatic and was celiac disease discovered because of a non GI issue. Thanks!

Hi. My symptoms sort of came and wentat intervals - and they werent at that point linked to eating gluten, as I was eating gluten allt he time, but only felt ill every so often. the usual D, nausea, throwing up, very bad abdom pain, extreme distension - my stomach could increase from 30 inches to 45 within a day, brain fog, feeling generally lousy, weird temp changes, and also acid reflux oesophagitis. In the end I only went to the doctor, because I was loosing a lot of blood with the D, and it was getting worrying. Also whenever my stomach swelled up, the acid reflux would get really bad and I was having mild anaphylactic reactions to all members of the drug family that treats this. So after I mentioned to GP that my dad is coeliac, and had been diagnosed over 15 years, she suggested I get blood test for that along with a range of other things.I have a very bad needle phobia,which is why I waited until I needed it sorting out to see the doctor. Blood test was positive, and had elevated white cell count too, as well as being very anaemic.

Hope that helps with what you wanted to know. A lot of coealics find their response to gluten is a lot more acute after being on the gluten-free diet - they become sensitised to it.

[natalunia]

I had D atleast once every other week, often every other day. I finally figured out what was causing the problems when I went on the South Beach Diet and during the 2 week induction phase I had no D. I went off of the South Beach Diet and started paying attention to what I was eating and linked my D with pasta, cake, bread. My GI symptoms were sporadic if you call every other week sporadic, but the fatigue was continual, constant, and life altering.

[Smunkeemom]

My GI symptoms were sporadic and random, my other symptoms (the ones from not gettting enough nutrients) happened all the time, for at least 10 years. However, when you are chubby like me, it's assumed that you are getting enough to eat, so they don't go into even trying to figure out why your body is acting like you are starving to death, they just assume that you are a hypochondriac.

[tarnalberry]

I came to a gluten-intolerance diagnosis via non-GI symptoms, and the GI symptoms I had were mild at worst, moderate constipation (hard, but normal frequency) and minor bloating (nothing more than you tend to see on small-frame women anyway). The brain fog, moderate fatigue, and belly noises didn't seem particularly abnormal to me at the time; turns out they were abnormal.

[CarlaB]

Mine were sporadic over my whole life (I'm 43). During times of great stress they got disabling to the point I could not work. I had many mystery emergency room visits, the first one being when I was in college. They'd give me an IV to rehydrate me, then send me home.

After a severe illness, I got terrible joint pain, and associated it with eating wheat through a rotation diet. I was "off wheat" for three years, but unaware of where it's hidden. After three years, I got IBS symptoms and lost a pound a week for three months until I got scared and ate high calorie food constantly (a friend on a diet told me I was eating at least 3500 calories daily and I was maintaining 121 pounds -- I'm 5'8"). I got a blood test for celiac, which was negative, I'm sure due to not eating a significant amount of wheat. I went on a six week gluten challenge, was miserably ill and did not eat enough of it for a long enough time ... the results were inconclusive. Enterolab numbers came back that I had gluten intolerance (60, under 10 normal), an autoimmune response (44, under 10 normal), and was barely absorbing (285, under 300 is okay). I went to Enterolab after almost 3 months gluten-free.

[StrongerToday]

I actually started working with a Wellness Coach to helpe me loose weight. I was slowly changing my eating habits and paying more attention to my body. I did start to loose weight, but realized I was still having D every day, and it was getting worse. I'd often feel as if I had the flu - feverish, achey, dizzy. I can look back now and see other incidents where I was probably having a reaction. I would often go to bed with a heating pad on my stomach and I also had the worst stomach noises, I thought for sure that little Alien baby was going to pop right out of my stomach any minute! I finally went to the dr. and he told me most GI symptoms are from food intolerences and I should not eat gluten or dairy for six weeks. He also ran blood tests, but those came back "normal".

Stress does seem to bring on D for me again, but usually just one or two small episodes, not the marathon it used to be.

So officially I don't have a diagnosis, but I feel better and have lost 54 lbs!

[nettiebeads]

  JerryK said:

I’m curious if some of you can relate what your symptoms were like before you received an official diagnoses.

Were your symptoms sporadic? Were they constant? Were you asymptomatic and was celiac disease discovered because of a non GI issue. Thanks!

I was one of the rare ones to be dx'd after being ill for only 6 weeks. Had a sever sinus infection, put on Keflex, developed D. The D was constant, no known causes, was put on the gluten-free diet, immediate relief, voila! celiac disease! But after all these years, my responses have to cc or hidden gluten has changed. Sometimes it's D, others it's C, or D immediately followed by SEVERE C, but always the fatigue, brain fog, irritability and depression.

Annette

[jaimek]

My symptoms were definitely sporadic. I had D every once in a while, but really severe (maybe once/twice a month). I also had numbness in my arms/legs, constant headaches, fatigue, weight loss, night sweats, and bruising. I saw a Neurologist, Eye doctor (for headaches), Family doctor, etc. I finally saw a Gastro dr. for severe indigestion and he diagnosed me right away.