Celiac or alternate(s) illness?

[Recoded]

Hello,

I am male ,23 years old, 6.1 feet and less than 152 lbs, living in France.

Symptoms I had for a LONG TIME:

I've been suffering from chronic fatigue for years, never had a day without requiring at least 1hour nap for as far as I can remember.Chronic diareah and fool smelling stools and gas was the norm for me. As well as not being alert.

From 30 to 1 hour after a meal I would start getting cold then I'd feel more and more sleepy with my heart beating fast until I couldn't resist sleep anymore, then I would wake up and had no choice but to go take a walk because I'd feel very bad, with hot cheeks and feeling hyperactive.

My hands were always cold(ppl thought I had raynaud's disease), I had permanent dark circles under the eyes , almost always pale with a yellowy color and often red cheeks. I also had abnormal body composition(too much fat not enough muscles). I had breathing problems despite being physically active(1h walks per day or 30 mn of running) . Foam in my pee. Sweating too much, like my body was stressed from digesting.Also Thin hair and thin bones.Had 5 fillings done over the years despite not eating much sugar and brushing teeth properly 3 times per days 1h after meals for years.

 

Recent symptoms:

I've been bearing with the fatigue for years and managed to get my bachelor's degree in physics despite it, but the last year was very hard for me. I wanted to get more weigh for manly reasons so I increased my food amount and thus my amount of bread, pasta and meat, I also started doing pushups but my fatigue gradually got even worse than before.

I started to suffer from brain fogs since january of this year.I finished my school year with good grades at the end of may and got a 4 month holiday.2 monthes in and I got more and more brain fogs until it got permanent. I also started to get weird depressing thoughs,couldn't even watch my series like I used to and started envying the characters who were energic and happy in the series. Watching series was taking all my concentration and required taking frequent pauses because it was too hard on me. I had to reread lines of books or images of mangas when I read them because I had trouble following what was going on.

I was also losing more and more weight despite trying to eat more and some of the foods I was eating made me feel like poison was running through my veins, like there was a heartbeat inside my arms and blood was circulating wrongly.

I was sleeping 8 hours per night and 2 to 3 hours per days though I was waking up more and more during the night. My eyes needed blinking a lot and it felt like my vision was getting weird.

I also got a tendinotis in my left knee and a tendinotis in my left elbow at around the same time, end of june-july.

Recently got told by my dentist that I have currently at least 5 teethes with tooth decay including 2 big tooth decay ones despite my good higyene ...

 

Celiac or not?:

So my symptoms were getting worse and my family was treating me like a depressed hypocondriac (I did have depressing though btw but being depressed isn't in my nature so I wasn't and just fought these thoughs), saying my fatigue was normal because I must had been stressed from my exams and I just had to eat more (I wasn't feeling stressed and was eating a lot).It took until august till they let me see a doctor. The doctor was worried when she saw me and ordered blood tests and thought I was dehydatred so told me to drink more(been drinking 3L of water and 2 cofee per days since forever).

Blood tests had some anomalies:

Borderline high hemoglobins(17 g/dl) , urea(0.52 g/l) creatinin 12.5 mg/l potassium 4.6mmol/l calcium 102mg/l ferritin 403ug/l Transaminase(SGPT or ALAT) 47UI/l , Albumin 49.4 g/l and Gamma 15.4g/l .Conclusion was discrete hypergammaglobulinemia, the rest was normal. I had good tryglycerides, cholesterol(HDL and LDL), fasting glycemia level and TSH value , rest was normal.

One month later new test got urea 0.47 g/l creatinin 10.8 mg/l , which rules out kidney problems. Ferritin went to 440 and transaminase got back to 24. still had high albumin/gamma. I had my postprandial glycemia tested cause I thought I may have diabete:0.97 g/l , normal

I had to change to a new doctor and asked if it couldn't be an intolerance to something since I had to stop cereals in the past(sugar+wheat+chocolate inside it, maybe other things) because they instantly gave me red itching cheeks and not feeling good. He told me to stop gluten for 1 month and blood tested me for celiac. Weight tested me: 71 kg

tTG iGa AND Ttg IGg WERE UNDER 5 u/ML , igA and igG Anti-endomsium and igA anti-reticuline were under 10 so negative results( no values displayed)

A few days in the gluten free diet I started feeling awsome during a whole day, like lot of energy, blood circulating properly, mental abilities and reflexes at the best I ever had,it felt like I was on permanent cofee. Only lasted until the next morning at breakfast though. 2 Weeks in my stomach started contracting itself, like my stomach that always felt bloated was getting normal.

I had to remove all dairy products: yogurts were giving me the blood circulating weird and gives me poor sleep at night and other feelings, tried goat yogurt later, it doesn't do the same but gives me diareah. Had to limit my intake of cheese: was giving my breathing problems. Recently had to stop stewed fruits cause it gives me weird reactions. Products with too much sugar or carbs give me bad reactions too(swollen stomach and hyperactivity for 1h30-2h)

My diareah went away but got replaced by floating stools with white, dark and some red spots in them, good thing is my toilet paper consumption reduced dramatically. My doctor didn't find that weird and wanted to wait until referring me to a GI. The stomach contracting itself went away after 2-3 weeks and got replaced by itching on my body for 2 weeks.

My brain fog gradually dissapeared and got replaced by pressure in the head and behing my eyes, my concentration got better, my eyes needed less blinking than before, I felt more alert and like my blood was circulating normally.

I'm now 2 monthes in and I've had some days where I could last a whole day without needing to nap or being fatigued(miracle) though many days I still tend to fall either asleep or fatigued/hyperactive after some meals. Almost ALL my other symptoms have dissapeared: no more permanent cold hands or feeling cold after meals,no more waking up feeling very bad and hyperactive, much less red cheeks, no more breathing problems, my skin is starting to look better, my head pressures and brain fog have dissapeared, my hair got thicker.

I still got weird feelings after meals and some fatigue but I feel much better than the zombie I was 2 monthes ago. I'm still losing weight(from 71kg mid-day to less than 69kg after a big meal, in 2 monthes)

Recently my doctor tested me for bilirubin and vitamin D: high bilirubin(25 when normal is less than 10) and low vit D:26 ng/ml , he made me do abdominal ultrasound exam and everything is normal. Went to see him today and he told me some bulls$#& like all my problems could be due to Gilbert's syndrome and my vitamin D is because I don't eat enough butter but since he's not sure he's finally reffering me to a GI.

 

TLDR: based on symptoms and blood abnormalies, despite negative celiac blood tests, do I have celiac or is it possible I have diseases other than celiac which the gluten free diet would cure? I ask because I'm 1 month away from seeing a GI and based on my symptoms I'm not willing to eat gluten again for some time so biopsy may test false negative. Also most of my family has a lot of weird symptoms that they shouldn't have and that celiac could explain.

Thanks for the long read and good day.

 

 

 

 

 

 

[GFinDC]

Hi Recoded,

Welcome to the forum!

It sure sounds like you have celiac disease to me.  I guess your doctor never did an  endoscopy?  The endoscopy is the 2nd part of a celiac diagnosis, where they take biopsy samples to check for gut damage.

Celiac is linked to certain genes and does tend to run in families, along with other autoimmune conditions.  So your immediate family members should be tested also.

Lactose intolerance is an issue for celiacs sometimes due to damage to the villi lining the gut.  The villi in the small intestine make an enzyme that digests lactose a sugar in cow's milk.  Without the lactase enzyme, the sugar is eaten by bacteria who really like it.  They make gas and cause other unpleasant things to happen.  Sometimes people can regain the ability to eat dairy after they have healed some.  Perhaps 6 months or so.

If you can stick to eating whole unprocessed foods for at least 3 months it will give your gut a chance to heal.  Whole foods are easier to eat because they have less chemical additives and you can verify they are gluten free easier.

It's great to hear you are feeling better!

 

[SimplyPatti]

Hi! I am sorry you are not feeling well.  Sometimes you have to be your own advocate when you are trying to find out what your symptoms could be from. I am online researching all the time trying to figure out what my symptoms mean.  So, I have learned that once you get one autoimmune disease, such as Celiac Disease, it is easy to get others.

I would ask your doctor to test your thyroid for hypothyroid (underactive thyroid) and also for hyperactive thyroid. Also, look into Sjogrens Syndrome or disease.  Many people with Celiac Disease also get Sjogrens. The itchy rash that you get could be DH (Dermititis Herpiformis) otherwise known as the Celiac Rash which is basically Celiac of the skin. I have all of these (getting tested for SJOGRENS soon.) i have hypothyroid (not hyper) which is most likely Hashimoto's.  

I hope this helps. Just keep pushing on and do your best.  Remember, it takes about 6 months for your intestines to heal after you go on a strict gluten-free diet- no cheating. Research is key. I go to my family doctor and educate him because I have learned so much through this journey.  Get your rest and do not overdo. Your body needs to heal.  Oh, also have your iron levels tested, could be anemic. So your B12 levels and vitamin D.  There are over 300 symptoms of Celiac Disease. Good luck!

 

[Recoded]

Thanks for the answers.
I have not had any testing done for celiacs besides the blood tests , I asked my doctor if I could have a food intolerance given the immediate symptoms some cereals were giving me in the past and he put me on gluten free diet.
The improvements in my condition and the physical sensations I've been feeling just by cutting gluten are what make me think it's celiac.I also developped an intolerance to egg and I think fructose and cafeine since then. I also got reactions from some brand of rice and lentils.
I probably won't have any biopsy done until one or 2 monthes if at all so I'm worried if I'll ever know if it was celiac or something else, could my vili still be damaged in 2 monthes giving me positive results or can it come back false negative thus never giving me a conclusion?
I have had some bone pains and more and more bones cracking/popping lately as well as weird tingling in my legs/feets. With my calcium and vit D being high/low+thin bones+multiple tooth decays, I was wondering if having oesteoporosis was possible? I'd ask my doctor but until I have a real diagnostic for what I have he'll just think I'm hypocondriac.

[squirmingitch]

You have to eat gluten every day for at least 2 weeks or a biopsy will be negative.

[GFinDC]

Right, 2 months gluten-free is too long before an endoscopy.  By 2 months time though you should have a pretty good idea if gluten is the trigger for your symptoms.  If they are clearing up by then and the only change is eliminating gluten then you know gluten is a problem.  Testing or not, our bodies like to tell us the truth.

[Recoded]

Hi, I took a look at my latest blood tests and after some reading I think I may have found a cause of my abnormalies:
normal iron :118ug/dl , low transferrin: 1.92 g/l high transferrin saturation:44% high ferritin:450ug/l high total bilirubin:20.6 mg/l
My family doctor didn't find that abnormal but while reading on the forum i found what's called hemochromatosis. My values do seem to fit. It's a genetical condition and there seems to be a link to the gene causing celiac.
Since it's genetic it could explain the health and MULTIPLE problems of my mother and why my sister has a cirhosis despite the fact that she never drank alcohol and eats a healthy diet.
I think I may have both celiac and hemochromatosis based on the gluten-free diet improvments. Will try to see that with my doctor (or find a new one since he refuses to tests me for vitamin or mineral defficiencies or hormones imbalances or insulin levels ....) and the GI I will see.

[GFinDC]

Hi Recoded,

It looks like they can test your genes for the hemochromatosis risk.  That seems like it would be worth doing to find out for sure.  This Mayo clinic link suggests that in women the hemochromatosis issues don't usually become a problem until after menopause.  So that's something to check with your sister and mother if their symptoms started then.

There is also a condition called CVID that can cause celiac disease like symptoms.  That might be worth looking into also.

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[Recoded]

Hi.

I have hypergammaglobulinemia and normal hemoglobin(17 g/dl) so it seems like the opposite of CVID(hypogamma) thankfully.

I took my appointment with the GI, earliest date to see her for the first time is at the beginning of march 2017 ....

[Chaitali]

Hello,

I am a 27 year old female weighing 37.7 kgs. I have been trying to put on weight since many years now but all efforts have been in vain. I was a very healthy and chubby baby but as I grew up I had problems gaining weight even though I eat a healthy and full diet just like any other normal person. Over the years I have tried every option to gain weight including tonics to increase my appetite, protein shakes, pills, going to the gym for weight-gain, nutrition shakes and all possible options, but nothing has worked. I have been between 35-37.7 kgs for the past 5 years now. 

I recently started going to a nutrition studio where the coach explained me the concept of "villi" and how it it responsible for absorbing nutrients in the body. She told me that the reason I am not able to put on weight is probably because my villi must be severely damaged. After my visit to the nutrition studio, I started researching about villi, small intestines etc. and one thing led to another and I came to know about Celiac Disease. I have been hearing about gluten-free diet and always thought that it was a lifestyle chosen by many voluntarily, little did I know that there is actually a disease which can make a person allergic to gluten. 

From my further research, I found out that one of the less known symptoms of celiac disease is loss of weight or inability to put on weight, which is what got me to this forum. Another symptoms that I posses are: frequent colds, pain in my joints (knees mainly) - I always thought this was because I have a history of arthritis in my family from my grandmother to my mother, so I assumed I am gonna get it too some day, also I have always had dark circles even if my sleep routine is normal. 

Can anyone advice me on whether should I get myself tested for Celiac disease or this could be something else.

PS: After my mom got tested positive for thyroid, I got tested too but it came out negative - so not being able to gain weight could not possibly be because of that.

[GFinDC]

Hi Chaitali,

I do think you should be tested for celiac disease.  The testing is 2 parts.  First the doctor takes a blood sample for lab analysis.  They look for immune system antibodies to gliaden, a protein in wheat.  If the antibodies are positive, they schedule an endoscopy to take biopsy samples of the small intestine lining.  Those biopsy samples are examined for indications of celiac disease damage.  If both these tests are positive then you have celiac disease.  Don't stop eating gluten until the testing is done.

Another test that should be done is to check all your vitamin levels.  Celiac disease impairs the ability of your gut to digest and absorb nutrients (vitamins, mineral, fats, carbs, etc).  So we can become deficient in various vitamins and minerals, like vitamin D, and B-12.  Normally our guts will heal enough to absorb those nutrients adequately after being gluten-free for a while.  Six months to a year or so perhaps.

One of the classic symptoms of celiac disease is weight loss, or failure to thrive in children.  The children don't grow normally and may be small and and have poor teeth.  Lacking vitamins can cause a number of problems all by itself.

The celiac blood screening test is often the ttg IgA.  This is only one of the possible antibody tests that can be done.  The complete celiac disease test panel includes DGP IgA and DGP IgG, plus total Iga and EMA IgA.  IMHO they (doctors) should do the complete celiac disease panel if the ttg IgA screening is positive because some people don't show up on just one test but do show positive on another test.  It is good to know what antibodies your body is making for follow up testing.

Celiac does not involve IgE antibodies so it's not considered an allergy.  Instead it is called an autoimmune disease because the immune system attacks the body.  You'll hear people talk about food intolerances rather than allergies too.  Allergies have different symptoms than intolerances also.

There is another possible tie-in to celiac disease.  People with celiac disease have a higher than normal chance of getting several other autoimmune diseases.  One of those conditions is an autoimmune disease called Hashimoto's Thyroiditis.  Women are more likely to get Hashimoto's than men.  Hashimoto's attacks the thyroid and can eventually destroy it.  The symptoms can include varying thyroid hormone levels.  So your thyroid hormone levels could look normal, look high, or look low.  There is a test for Hashimoto's called a TPO antibodies test.  You could ask your doctor if he did that test.  Also, your relatives could be tested for it also.

Celiac disease runs in families (genetic link) and other people in your family may have the same genes and develop celiac also.

Welcome to the forum Chaitali!

[Chaitali]

@GFinDC Thank you for your reply, I would book an appointment with the doctor soon and discuss this with him/her.