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My Doctor Doesn't Believe Me

Ellie2

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Ellie2 Newbie
Ellie2
Posted

I'm new to this Coeliac /celiac thing, so I apologise in advance. Thanks to anyone that reads this as it's my first post!

For months I have been thinking that I am falling to pieces, skin problem, I thought I had shin splints, bad headaches, rapid weight loss, dizzy spells, nausea before and after eating, tiredness and fatigue (which seems to be getting worse) and diahorrea and constipation, bloating etc.

I had the rash/nasty blistery itchy sores on my fingers on both hands, but only on three fingers on each hand - this came first - went to doctors 6 times with this - conclusion is that I have contact dermatitis? Probably not far off, then I go to the doctors with nausea and rapid weight loss (a stone in 5 weeks!) about 10 appointments + over the past 6 months - I am apparently not intaking enough calories and I should go on a high fat diet! My doctor seems to think that I want to be 7 and a half stone (around 48KG) and I have done this to myself????

Then I get the most terrible pains in my knees, shins, ankles (my legs basically) and they said I was overdoing it.

Whilst all of this is going on, I have the daily nasty headaches, sometimes blurry vision, nausea, diahorrea, bloating uncomfortable stomach, reoccuring itchy rash on palm of right hand and fingers, oh and a scabby itchy bleeding scalp and the worst fatigue/tiredness.

SO MY QUESTION FOR ANYONE PLEASE - IS THIS COELIACS DISEASE? AM I A HYPERCONDRIAC - or is my doctor and overpaid good for nothing? AND anyone else in the UK - can I sue my doctor?

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CarlaB Enthusiast
CarlaB
Posted

It could be celiac disease. It could be Lyme Disease. The symptoms of the two are almost the same.

I would ask the doctor to start testing you and if he won't, I'd find another doctor! The celiac test is a simple blood test ... he should be willing to do it for you.

And, no, you're not a hypochondriac. I've been accused of being one myself. My doctor told me my disease was psychosomatic. Ends up, I'm very ill for real!

Nantzie Collaborator
Nantzie
Posted

Sounds a lot like celiac to me. The only way to really tell, if your doctor won't support you in figuring out what is wrong rather than treat you like he's been treating you, is to just try the gluten-free diet and see if it helps.

There are other foods that can cause really bad reactions, so even if it's not gluten, food intolerances of some sort are a very real possibility. There are a lot of people here who have additional food intolerances, so even if it ends up not being gluten, this is a good place to come while you figure all this out. To me though, it sounds a lot like celiac.

Welcome to the board. Make yourself at home.

Nancy

Guest j_mommy
Guest j_mommy
Posted

Sure sounds like it could be celiac!!!!! I went into my Dr's with these syptoms for 24 yrs and no one noticed. I finally got a Dr that knew and tested for it! Next time you go to your DR.....say I'm paying for this and I want to be tested!!!!!!! Or find another Dr. You pay, you decide!!!!! Dr's can be sooooo frustrating...they're supposed to be guiding us, not us guiding them. With Celiac I'm guiding them, they diagnosed me and now I'm teaching them what I know!

Ellie2 Newbie
Ellie2
Posted
  • Author

Hi and thanks for my quick responses, I am interested in Lymes disease - is this bad? I have never heard of it before. Also reading up on celiac disease, I realise this would affect my life/change my life, but is it very serious is controlled by a gluten free diet. I worry about whether my body needs a wheat replacement - isn't my body missing a food group on a gluten-free diet? Does this shorten length of life? I am probably worrying to much now!!! ;) Thanks for your responses though, it's great to know that there are others out there that have experienced similar symptoms (not wishing anyone health problems!) but it's nice to know that you're not alone!

ravenwoodglass Mentor
ravenwoodglass
Posted

I would advise you to do 2 things, first while you are still eating gluten DEMAND a celiac panel and a check of your iron, folate and B12 levels.

Then give the diet a good try no matter what the blood tests say. The best way to do this is by eating naturally gluten free, minimally or unprocessed foods for a month or two. It is best if you can to remove dairy at the same time for a bit.

You have come to a good place for information, make sure you check out the homepage and some of the links there as well as reading as many posts as you can.

I hope you get some relief soon.

Ellie2 Newbie
Ellie2
Posted
  • Author

Thanks to everyone on here tonight, I will demand blood testing from my doctor tomorrow as it is my right and I agree that whatever the results show I will try a gluten free diet for a month and if it makes me feel better I will continue.

I can't keep feeling like this - it seems to get worse as the weeks go on! Today I've had diarrhea (sorry folks!), reacurring headaches, nausea, bloating, wind, fatigue and the pain in my leg (feels like my leg bone is aching???under the skin and a little similar to Siatica?) This is just today? I have forgotten what normal feels like - is this the life of a Celiac when still on gluten?

I also have a 9 month old baby boy and I feel like I can't pick him up/look after him some days, purely due to weight loss and fatigue!

Thanks to everyone for the comments and suggestions! This certainly seems to be the place to come for the advice I needed!

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VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

Could be Crohns disease as well

happygirl Collaborator
happygirl
Posted

If you have a gluten problem:

No, its not what life is like once you start and remain on the diet, and heal. Once you have healed, your symptoms are gone and you are normal. The only times you aren't normal are when you eat gluten. (that is, if your only health problem is the gluten issue. many celiacs have other issues as well, like thyroid, diabetes, etc). When I went gluten free, I was given my life back.

Take this list with you: these are the tests you want ordered:

from: http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

Serologic panel

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

(I realize that this an American doctor, but he is one of the leading Celiac experts).

SomaDee Newbie
SomaDee
Posted
If you have a gluten problem:

No, its not what life is like once you start and remain on the diet, and heal. Once you have healed, your symptoms are gone and you are normal. The only times you aren't normal are when you eat gluten. (that is, if your only health problem is the gluten issue. many celiacs have other issues as well, like thyroid, diabetes, etc). When I went gluten free, I was given my life back.

Take this list with you: these are the tests you want ordered:

from: http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

Serologic panel

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

(I realize that this an American doctor, but he is one of the leading Celiac experts).

I had a problem with the doctors I went to with getting them to order the serologic panel so I went to an online lab that had the test and ordered one through them. Has anyone here taken the test from an online lab before? Was curious as to if I'm wasting my money on it or not. But that may be an option for Ellie2 if she has no luck with getting her doctor to run the test.

glutenfreenew Rookie
glutenfreenew
Posted
I'm new to this Coeliac /celiac thing, so I apologise in advance. Thanks to anyone that reads this as it's my first post!

For months I have been thinking that I am falling to pieces, skin problem, I thought I had shin splints, bad headaches, rapid weight loss, dizzy spells, nausea before and after eating, tiredness and fatigue (which seems to be getting worse) and diahorrea and constipation, bloating etc.

I had the rash/nasty blistery itchy sores on my fingers on both hands, but only on three fingers on each hand - this came first - went to doctors 6 times with this - conclusion is that I have contact dermatitis? Probably not far off, then I go to the doctors with nausea and rapid weight loss (a stone in 5 weeks!) about 10 appointments + over the past 6 months - I am apparently not intaking enough calories and I should go on a high fat diet! My doctor seems to think that I want to be 7 and a half stone (around 48KG) and I have done this to myself????

Then I get the most terrible pains in my knees, shins, ankles (my legs basically) and they said I was overdoing it.

Whilst all of this is going on, I have the daily nasty headaches, sometimes blurry vision, nausea, diahorrea, bloating uncomfortable stomach, reoccuring itchy rash on palm of right hand and fingers, oh and a scabby itchy bleeding scalp and the worst fatigue/tiredness.

SO MY QUESTION FOR ANYONE PLEASE - IS THIS COELIACS DISEASE? AM I A HYPERCONDRIAC - or is my doctor and overpaid good for nothing? AND anyone else in the UK - can I sue my doctor?

hi , my name is Stephanie and I live in Phx, Arizona. I was diagnosed with celiac in July of 2006. I was constantly having stomach problems( diarhea, bloating , gas and even malabsorption issues where i would loose pounds in a day ) I was down to 90 pounds and having terrible leg pains for years (15 yrs) no one could tell me why. I had days i couldnt get out of bed becuz my legs hurt so bad. I was constantly tired and weak and having migraines, my vision got worse and now I have glasses. I have been gluten free since then and have been improving slowly. I have extreme dermatitis herpetiformis( the blisters that appear and ooze then itch and burn for weeks.

I went to a doctor once i got down to 90 pounds ( i lost 15) and was covered with dermatitis. the doc told me that i was anerexic and lazy but reluctantly referred me to a gi specialist who basicly gave me a paragraph on celiac disease and said good luck you have this. Most dr's dont want to fix you. Hve you tried keeping gluten free and seen any changes? It can take years to recover and i find im still learning myself . I was told about advantan cream for the blisters which is mainly a corticosteriod cream with methylprednisolone in it. I have found it to order online but not yet in the states. good luck if you have any questions youre in the right place.

SunnyDyRain Enthusiast
SunnyDyRain
Posted
hi , my name is Stephanie and I live in Phx, Arizona. I was diagnosed with celiac in July of 2006. I was constantly having stomach problems( diarhea, bloating , gas and even malabsorption issues where i would loose pounds in a day ) I was down to 90 pounds and having terrible leg pains for years (15 yrs) no one could tell me why. I had days i couldnt get out of bed becuz my legs hurt so bad. I was constantly tired and weak and having migraines, my vision got worse and now I have glasses. I have been gluten free since then and have been improving slowly. I have extreme dermatitis herpetiformis( the blisters that appear and ooze then itch and burn for weeks.

I went to a doctor once i got down to 90 pounds ( i lost 15) and was covered with dermatitis. the doc told me that i was anerexic and lazy but reluctantly referred me to a gi specialist who basicly gave me a paragraph on celiac disease and said good luck you have this. Most dr's dont want to fix you. Hve you tried keeping gluten free and seen any changes? It can take years to recover and i find im still learning myself . I was told about advantan cream for the blisters which is mainly a corticosteriod cream with methylprednisolone in it. I have found it to order online but not yet in the states. good luck if you have any questions youre in the right place.

I too am another one who needed to go to the doctor and say "I think I have Celiac Disease, Give me these tests." She was reluctant, but gave me the test.. it was positive thankfully. If your not positive don't let it get you down, it still may be gluten, get a biopsy or just go gluten free and see how you feel. It may take several monthes for you to see an improvement, but I've been doing it less than 2 mo and I feel better allready!

Karen B. Explorer
Karen B.
Posted
---snip---I worry about whether my body needs a wheat replacement - isn't my body missing a food group on a gluten-free diet? Does this shorten length of life? ---snip---

Your body won't need a wheat replacement. Quite a bit of the world gets along without wheat just fine. Even for people without Celiac, wheat isn't the easiest thing to digest sometimes. If you need a gluten-free diet and you aren't getting it, that can create health problems. I've been so much healthier since going gluten-free! I broke my wrist a couple of years ago and the doc commented that I healed "ahead of the curve" and returned to a much higher level of function in that wrist than most of his patients.

Nancym Enthusiast
Nancym
Posted

Somehow the human race managed to do just fine without wheat until a few thousand years ago.

Calikat4 Rookie
Calikat4
Posted

I sympathize with what you are going through. I had symptoms for 8 years before being diagnosed with celiac -- in that time I was told to see psychiatrists and psychologists because no tests revealed anything "wrong" (so it must have been all in my head). The most important thing is to remember that you have to advocate for yourself. Demand that certain tests be done and demand that the doctors get to the bottom of what is going on. I feel for you.

Also, just so you know, my celiac was not diagnosed through a blood test or a colonoscopy but an endoscopy (they put you to sleep and stick a small camera down into your intestines -- it sounds nasty but it's really not that bad).

lurven71 Newbie
lurven71
Posted

I put up with this for years as well. It makes you start to doubt yourself. My only advice to you is listen to what you think is true (in your own head and body).....

I know that there are specialized Celiac clinics in the UK...there is one near me in Oxford. Can you get a referral to one of these clinics?

I was only diagnosed last April and it takes time to get it right. Good luck.

Oh, yes. I have terrible leg pain as well...mostly in my shins. It has gone away on a gluten free diet. It was so bad it hurt to touch my own legs in bed with my feet:) Good luck!

nora-n Rookie
nora-n
Posted

Here in this country we get about 200 dollars a month if we get an official diagnosis of celiac or DH. How much is it in the UK?

nora

CarlaB Enthusiast
CarlaB
Posted
I am interested in Lymes disease - is this bad? I have never heard of it before.

Right now, don't worry about how bad a disease is ... worry about finding out what's wrong! You have had some good advice here ... get started with testing.

Three different diseases have been mentioned -- celiac, crohns, and lyme. For celiac, the first step is a simple blood test. The second step is an endoscopy, and you might want a colonoscopy to see about crohns.

Lyme testing isn't as easy. You need to have your blood sent to IGeneX, the one lab that does ONLY Lyme testing, so it's very accurate. I had them send me the test kit, then I took it to my doctor. The only reason it's not easy is because doctors don't want to test for it or treat it. For some basic information go to this website: http://www.ilads.org/basic.html

Good luck! Feeling bad is NOT normal, don't let any doctor tell you it is!!

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

In my opinion, you know something is wrong with you, therefore you are not a hypocondriac. Find a doctor who will blood test, gene test, endoscopy until they get you feeling normal again. Also look into Entero labs for alternate testing if needed.

FYI: Pregnancy can bring on symptoms of celiacs that were liveable or dormant for years. It did for me. My first pregnancy was easy, losing the prego weight a snap - I was sick as death for the next three years and told it was from nursing then in my head and nothing was wrong. finally a nurse demanded that the doctor send me to a GastroInterologist. This guy was great. Tested me for everything, proved what he knew was wrong with me at first sight. But, the celiac blood test was negative. I was malnurished, depressed, and no celiac. Finally did na endoscopy and biopsy which proved positive for Celiacs. His answer was within one month you will know more about this disease than I do. At first that really disturbed me, but know I understand. He needs to see th signs and diagnoise the disease. I need to learn and manage the foods which cannot be done unless you live the disease.

Now I have a strange relationship with doctors. I question them, sometimes I grill them, It is my health and they need to explain it to me and listen to me when I say something is wrong. Rarely do I go to a doctor with symptoms that are not justified. I would be shocked if my doctors did not suspect me of being a hypochrondriac when they first met me. That's life as a celiac with additional food allegies :rolleyes:

  • 11 years later...
Christina Marti Newbie
Christina Marti
Posted

Sounds like Celiac to me trust me I’m celiac 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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