Please Help! Could I Have Celiac Disease?

[sadsickgirl]

Hi everyone,

I've just joined up and am hoping I can get some answers to my questions. Thanks for all help in advance . I have been feeling significantly unwell for the last six months or so and haven't been in optimal health for close to seven years. I'm not sure as to whether my symptoms could be caused by celiac disease or not. I have spoken to a number of doctors about what I've been experiencing and when asked about celiac disease they have dismissed the possibility. Despite this I begged one of my doctors to do celiac blood work for me and it came back negative.

So my symptoms are:

- In the last six months I've started to develop horrible joint pain. My wrists, knees, ankles, fingers, elbows, neck and upper spine seem to be affected. I have had blood tests done for rheumatoid arthritis and they came back negative.

- For the last two years or so I have been experiencing extreme fatigue. I always seem to feel tired and have little energy. I can sleep for a very, very long time and still wake up feeling tired.

- Some what worryingly I have noticed that recently I seem to be experiencing small episodes of memory loss. This is very scary as I used to have a fantastic memory.

Now on to less debilitating/ scary symptoms,

- In the last two years or so I started getting headaches. Before then I never, ever got headaches. They're not migraines and aren't terrible but they are certainly there and can be annoying. (I don't know if this is relevant).

- I get mouth ulcers. I had braces on from 12-14 and got terrible ulcers then, but I am still getting them. They aren't the kind that hurt particularly badly, but I do have them.

- For as long as I can remember I have had some stomach upset after eating. Its not severe in any way and I presumed that it was normal, but its something that I've started to notice. Often I will need to release gas after a meal and my stomach will be ok (sorry for the TMI).

- In relation to this I do suffer from flatulence, late nate nausea (not severe) and a small amount of heart burn.

None of my GI symptoms are severe and I presumed that everyone felt like this.

Now on to more obscure symptoms:

- For a long time now I have had a terribly itchy, inflamed scalp. Its not dandruff and dandruff shampoo doesn't work but I'm listing all my symptoms so I thought I'd wack it on the list.

- Chronic yeast infections from the last year or so. (again sorry for the TMI).

So basically I don't feel very well at all, but my doctors and family are treating me like a hypochondriac. As I mentioned my celiac blood tests came back negative so I wanting opinions as to whether its likely that I do have celiac disease? I don't think any of my doctors would be keen on sending me for a biopsy as they are treating me like I'm making my symptoms up/ they are not important.

Please respond as I would love to hear about other peoples experiences. Thank you for taking the time to read my waffle.

[Skylark]

Yes, yes, yes, you could be celiac or gluten intolerant.

I had the always somewhat upset stomach and IBS too. They were cured once I went off gluten. I had the mouth ulcers and severe fatigue, and a weird eczema my doctors could never explain on my arms which also went away. Joint pain is a really common symptom too. You should try the diet!

The flatulence can be lactose intolerance. If your villi are damaged, they do not make lactase and you lose your tolerance to it.

Try to cut out grains, starch, and sugar for a while and take probiotics to give beneficial bacteria which will replace the yeast. Virgin coconut oil is great for yeast too.

[AVR1962]

Sure could be. You are displaying many of my same symptoms. Have you had any tests? Read! Tests are not totally accurate but that doesn't mean that you don't have celiac. Something is making your body do what it is and docs don't all have a real good knowledge of celiac, unfortunately.

I, like many here, went thru years of going to docs with no solution, tons of tests that turned up negative. If you are thinking of being tested, stay on gluten until are tests are preformed. If tests come back negative, which they may.....year later you could retest and they could be positive, you can try to gluten-free diet and see if you notice any improvement. If you decided to do this I would suggest to you also to go off dairy as well. When our intestines have been wrecked by gluten there are other systems that also stop working like they should. We many times become dairy intolerant at least for awhile.

By the sounds of your symptoms, I would guess not only do you have celiac but your body is probably deficient in vits which again docs are clueless to, in many cases.

Mouth ulcers- try 1000 mg of L-Lysine daily

Here is a chart that might help you link your health issues to defiecencies: Open Original Shared Link

The other thing I would add to this is to take a real good quality probiotic.

[rosetapper23]

I believe it's possible that you have celiac, but you should also get your thyroid tested because thyroid problems can cause memory problems, joint pain, and fatigue.

[ciamarie]

I'd agree with what others have already answered, and just wanted to add that I used to have headaches about every day when I used to drink diet soda (with aspartame / nutrasweet). It took me a little while to realize that's what was causing them. Fatigue, joint pain and skin issues I've also had, related to gluten.

[mushroom]

Stomach problems I lived with for years and years (told IBS) - check

Flatulence, farting and burping - check

Mouth ulcers - check

Joint pain (wrists, fingers, toes, shoulders, neck, upper arms) - check

Rheumatoid factor negative - check

Skin rash - check

Terrible scalp problems - check

Told I was a head case - check

Finally diagnosed with psoriatic arthritis - went gluten free in an attempt to treat that. Never tested but all symptoms except psoriatic arthritis cleared. I take meds for this but it is not nearly as bad as it used to be.

So I have no diagnosis, but I don't need one. I do think if you trialled the diet you would find some relief.

[sadsickgirl]

Hi everyone thanks for all your advice. I'm just bumping this up at I'm still having problems. Whilst a number of you did suggest trying the diet, I'm hesitant to give it a go without being tested further. The reason for this is mainly because I know my family will not be supportive of me going gluten free unless I have a medical diagnosis to back it up and even then they'll probably complain about it. They think I'm a hypochondriac and making everything up and should just do more exercise and get out more. The exercise is hard due to my joint pain. At the moment I'm really struggling with doctors - none of them think I have coeliac disease. I had an appointment today where the doctor told me I had IBS and should go on the FODMAP diet. Can anyone give any advice on how to find a decent doctor with knowledge about coeliac disease? I'm in Sydney Australia and have tried googling for coeliac specialists to no avail. I've also posted under the doctors section asking for recommendations in my area but nobody has responded yet. I'm really at a loss as what to do. Is there anyway for me to convince my doctor to recommend me to a gastroenterologist? I don't like me chances but you never know. Also does anyone know of a coeliac gastro in Sydney? Sorry for the rambling post but I just don't know what to do at the moment.

[jeanzdyn]

oh, you are NOT a hypochondriac! I had symptoms for over 30 years before my celiac disease diagnosis. No one ever said 'hypochodriac', but I knew they were thinking it. You have a 'laundry list' of seemingly un-connected symptoms and that makes it tough to even get the doc to listen to you.

My doctors put me off for years, saying "we all have problems, there is nothing wrong with you..."

It is a relief to have a diagnosis and to know how to proceed.

I am sorry that your family is not supportive of you. It is shameful how people react to this, and needing an actual medical diagnosis to get your family to change for you is a terrible thing. They should be ashamed of themselves.

[Hellothere]

Maybe you should get an ANA (anti nuclear antibodies) test to rule out Lupus?

[MitziG]

Tell your family your doctor has suggested you try the diet to see if it imptoves your IBS, leave it at that. Don't make a big issue out of it, and they won't either. If someone makes something you can't have, just say "no thank you" if they persist, tell them it upsets your stomach. Always bring a snack in your purse so you don't starve! If you have to avoid a scene, eat it in the bathroom. You do what you have to do.

We have all dealt with years of people thinking we are hypochondriacs. And once we felt better off gluten, we stopped complaining about how bad we felt. So a lot of people probably think we just got over being hypochondriacs!

You are responsible for your own well being, and you don't owe anyone an explanation as to why you choose one food over another. A doctors dx is a great vindication, but chances are good you are not celiac anyway, that you are gluten-intolerant, which can cause every same miserable symptom and is just as serious, and requires the same treatment.

Maybe you can get that endoscopy you want, but even if you ARE celiac, the biopsy may not show it. How will they view you then? Then you are a hypochondriac who nagged for an expensive test she didn't even need!

Might be time to say you can't win this battle. But the war is with your body, not your family, and you CAN win that.

You are not a hypochondriac, and you can feel better if you really choose to!

[Solandra]

You aren't imagining things... I was told by a couple of different doctors that I was crazy and that I needed to exercise and eat less, and that the lump on my thyroid wasn't really there (removed it last month, and it was 3cm! That's like.. an egg!). Find a good doctor who will take time and listen and do the right tests. You don't even have to tell your family you are going gluten free, either.. just say you are trying a healthier, low carb diet and eat mostly fruits and veggies and see how you feel after a few weeks. If you feel better, keep doing it. I also second getting your thyroid checked. I had been told for YEARS that I was fine, turns out I am hypothyroid and have Hashimoto's disease. Go figure!

[beachbirdie]

Hi everyone,

I've just joined up and am hoping I can get some answers to my questions. Thanks for all help in advance . I have been feeling significantly unwell for the last six months or so and haven't been in optimal health for close to seven years. I'm not sure as to whether my symptoms could be caused by celiac disease or not. I have spoken to a number of doctors about what I've been experiencing and when asked about celiac disease they have dismissed the possibility. Despite this I begged one of my doctors to do celiac blood work for me and it came back negative.

Please respond as I would love to hear about other peoples experiences. Thank you for taking the time to read my waffle.

First question: What celiac tests did they do? That is important to know, because often they only do ONE of the tests. There are several tests they should run, and many celiacs only end up positive on one of those...not every celiac tests positive on the same test.

Ask your doctor to give you a paper copy of your lab work, and let us know what they did. You might have inadequate testing. Your symptoms DO mean something.

I agree with everyone who said "get your thyroid tested". But again, do NOT accept their word for it if they say "normal". Get your results, and then come share them. They need to do several tests, not just one. They should do TSH and Free T4 at least. A really great doc will also do Free T3. I have Hashimoto's Thyroiditis, and I had a terrible time with joint pain, headaches, anxiety, and other stuff. Thyroid can cause a lot of trouble for your joints.

You are not a hypochondriac.

Once they have done adequate testing, try the gluten free diet. Give it plenty of time, it takes time to heal. Let us know how you are doing!

[KendraAnn]

I have a lot of the same symptoms as you and have for years. I did things a little backwards and first demanded a biopsy (positive) followed by blood work (negative). I've been gluten free for 20 days and can tell things are looking up but that its going to take a while. I think I read in another one of your posts talking about tingling hands/feet...that's a symptom and they call it celiac neuropathy. Also do you notice that you are a little more clumsy or hurt yourself on accident (stubbing toes, hitting your shoulder on a doorway, etc)? I've read that they call that celiac ataxia. The brain fog and forgetfulness is a symptom as well...I can be in the middle of a sentence and completely forget what I was trying to say.

I did see that you listed yeast infections...I used to have those and someone has mentioned to me Candida. Look it up...it has a lot of the same symptoms as Celiac or non-celiac gluten intolerance. I personally am trying gluten free for a few months before I try a candida diet because it is more restrictive. Whatever you come up with, you are not a hypochondriac and we have all been through this. Good luck!

[sadsickgirl]

Thanks for everyones suggestions and support, I really appreciate it. For those who asked I have been tested a number of times over the last six months for celiac. The doctors didn't tell me at the time as it was done as a routine screening for abdominal pain. Anyway I've since got hold of my blood test results. Whats interesting is in comparing the results it doesn't seem that the same tests were done and it seems like, whilst all three tests were negative, the results may be getting higher (the results are difficult to interpret, so I'm not sure). Anyway if anyone could offer any insight the results are posted below:

Nov/2011 results:

Gliadin IgG 3 Units (<20)

Total IgA 2.63 g/L (0.69-3.09)

Transglutaminase < 4 U/mL (< 4)

March 2012 results:

IgA 2.55 g/L (0.70-4.00)

Gliadin IgG <1 U/mL (<7)

TTG IgA 1 U/mL (<7)

April 2012 results:

Gliadin IgA Ab 16 Units (0-20)

tTG IGA/IGG 8 u/mL (0-24)

[mushroom]

Your tests are all squarely in the negative range, and your total IgA is normal. There are other tests for celiac, and the most specific, the DGP, has not been done. This is the newest test and will often pick it up when the others don't. You only need be positive on one of the tests. I would ask for this test to be run and if it, too, is negative, then it would appear that you are either one of the 20% who falsely test negative, or that you fall in the category of non-celiac gluten intolerant, which can give you lots of the same symptoms as celiac but is not actually celiac.

[sadsickgirl]

Thanks for the info Mushroom, I'll have to see if I can request that test when I next see my doctor.