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gluten intolerance question

(22 Posts)
Clarella Mon 23-Nov-15 11:57:27

I've seriously dismissed any indication that I have an issue with gluten in the past, however I'm struggling with a lot of pain, stiffness and fatigue.

Thyroid is fine (it is, I'm on thyroxine but t3 and t4 is fine), it wasn't for a while leading to a lot of weakness and pain and hypermobility syndrome.

However - I've just noticed food shooting through me when I have certain gluten rich dinners. It was very clear last week.

I spend a couple of days avoiding gluten and on Sunday felt quite good. Slept better too. Had a meal out and ate a lot of things but gluten in cake. Feel horrendous today!

It could be coincidence and I could blame cycle hormones, which is another thing I'm looking in to, but I wondered basically if gluten can cause the stiffness and muscle aches?

Internal aches generally and what feels like a pocket of air in my guts.

Clarella Mon 23-Nov-15 13:06:34

Also, I'm having a hard time putting weight on, and I eat pretty much what I want. It's better than it was but I do wonder.

I'm getting a thyroid test tomorrow to check I'm not on too much as would cause loose stools but last one was great.

Stools are fast and loose at times but not pale. My mil has recently been found to be gluten intolerant via gastro investigations but she was loosing hair and had pale greasy stools.

tinkerbellvspredator Tue 24-Nov-15 08:23:43

Yes coeliac can cause lots of different symptoms and can run in families, you seem to have quite obvious symptoms that at least warrant investigation. You need to keep eating gluten

tinkerbellvspredator Tue 24-Nov-15 08:25:16

Oh and if you have other autoimmune disorders, like thyroid issues, then you're more at risk of coeliac too

Clarella Tue 24-Nov-15 13:09:16

Thank you - I don't think it's coeliac (I think!)

My poo is not pale either. However I'm feeling it's very loose when I eat pasta or pizza, possibly bread.

I'm going to keep a diary for a while.

I just wondered if it was a possibility, and also if it can cause such bad joint issues?

Clarella Tue 24-Nov-15 13:09:26

To clarify, more an intolerance?

tinkerbellvspredator Tue 24-Nov-15 17:13:06

Why would you think it's an intolerance?

tinkerbellvspredator Tue 24-Nov-15 19:47:35

Yes it can cause sore joints, and no you don't need to have pale stools to be coeliac. I doubt an intolerance would cause sore joints as intolerances I think are supposed to be confined to gastro symptoms. Coeliac manifests in many different symptoms, including people who are symptomless.

Madelinehatter Tue 24-Nov-15 22:23:13

The being able to eat what you like is often a sign. I used to be a real skinny Minnie and ate for England. Then found I had Coeliacs, stopped gluten and gained 2 stone! I needed about a stone and a half though as was painfully thin. Ask doc for a blood test.

FreeWorker1 Tue 24-Nov-15 22:32:50

Good advice from all the posters above. You must keep eating gluten. You must have the tests.

However, I had all the symptoms you have and got the point I was too ill to walk. I had all the coeliac tests and they were all negative. In desperation I stopped eating gluten anyway and got instantly better. I have a specialist looking after me now. He has diagnosed me with non coeliac gluten intolerance. I have had it so long undiagnosed that I now have fibromyalgia with constant joint and muscle pain as well as exhaustion and many other symptoms.

My specialist is a world expert in gluten and it has a severe impact on the health of many people with a spectrum of conditions that goes far beyond coeliac.

You must have the coeliac tests first but if they come up negative and you still suspect a problem with gluten do please ask about Non Coeliac Gluten Intolerance (NCGI), It s only diagnosable after excluding all other potential causes and then only by observing your reaction to exclusion of gluten under medical supervision. If I reintroduce gluten I am in bed for two days.

Please don't exclude gluten from your diet though before you have had the coeliac tests though. You must be eating gluten to have those tests.

PrimalLass Tue 24-Nov-15 22:34:50

You should not eat gluten if you have a thyroid problem.

FreeWorker1 Wed 25-Nov-15 15:44:00

Prima - thyroid damage can be due to an autoimmune condition (Graves and Hashimoto's conditions). Coeliac is also an autoimmune condition. There are about 80 other known autoimmune conditions

Problem is she cant be tested for coeliac unless she is eating gluten.

I have been tested for thyroid deficiency/hyperactivity many times and I know that is not an issue but I think you need to explain more on your post.

The OP has to eat gluten in the short term until she has her coeliac tests surely?

PrimalLass Wed 25-Nov-15 16:54:42

Problem is she cant be tested for coeliac unless she is eating gluten...The OP has to eat gluten in the short term until she has her coeliac tests surely?

But she didn't mention that she was being tested for coeliac disease. Other posters said she should be.

In general, the advice for hypothyroidism is always to avoid gluten. That's all. I'm always surprised that people with hypothyroidism don't know that as it is fairly standard knowledge if you beyond what your GP tells you (usually very little).

PrimalLass Wed 25-Nov-15 17:16:33

Oh, and Freeworker1 you are preaching to the converted. My point was that she shouldn't have been eating it in the first place.

FreeWorker1 Wed 25-Nov-15 18:01:26

Prima - OK that makes sense. Gluten is definitely a potential factor in thyroid conditions according to my consultant.

The OP mentions gluten in her post and I and others thought she should have a formal test for coeliac but of course that will be complicated by her thyroid issues as you rightly point out.

Clarella - I think you need to talk to someone who is an autoimmune specialist. You have various indicators there of autoimmune conditions. Also just a point on your hypermobility as it is often linked to fibromyalgia. Which also results in joint pain and exhaustion. Fibromyalgia has in research reports I have read also been linked to diet and especially gluten.

You have a complex condition which sounds very similar to my situation at least from the symptoms and it may take quite some time to untangle. You need to become your own expert and unfortunately you may find doctors looking for obvious answers then discharging you when they don't find what they are looking for.

amitha Wed 25-Nov-15 18:06:47

I had terrible knee pain for years, no drugs, physio or anything helped. Stopped eating gluten due to a completely different health issue then noticed no knee pain anymore, been gluten and pair free for 4 yrs now.

Clarella Wed 25-Nov-15 18:26:28

This is a complicated mess! And long - sorry!!!

Sorry I really should have said,
I've been tested for coeliacs - about 2 years ago. About 7 months post baby. What came up was off thyroid hormones quite considerably ( I think a combo of not enough plus occasionally forgetting with a wee one.) I went up, I think too much causing more issues then put in sertraline. However later, this time last year, found out sertraline messes with thyroxine. Thyroxine was wacked up but started weaning off sertraline. Then when rapidly going down hill muscle wise my ferritin was found to be about 50. (Endo and GP described as not really fully normal) Upping that, coming off sertraline and going down to my old, pre baby thyroxine amount started my recovery but it's been really really tough, I had extreme proximal weakness.

This has started when tsh was 2.5 and 'lowish' ferritin last year but thereafter I'd been on too much thyroxine for too long. And I know there's always a 3 month delay.

Was then dx hypermobility syndrome and I'm flexible but I know it's really been made worse with the thyroxine carry on. I always loose muscle mass and get very skinny when hypo. Don't hold much fat. And then get skinny if hyper too!

'Normal' result was 6 mo ago. But I get terrible muscle / joint flares. Trying to unpick things and isolate causes. This was just one possible query.

The no gluten thyroid thing - I know about this but had never in the past noticed any tummy issues, ONLY if hypothyroid. Plus it's not a proven thing. GP agreed it could be but I'm not showing antibodies. However I've started noticing I can't eat pasta or pizza without it shooting through me.

So just now starting to think, could it be true?

I'm under investigation for some other things, and actually it really COULD be the hms + impact of thyroid + small child and I haven't really got a handle on pacing and physio etc/ back to work too so as well as the fact that a lot of things thyroid take a long time to really feel better (plus ferritin). And hormones.

Tbh I think I've had/ got some fm but I'm sort of refusing to go down that route and physio keeps encouraging me not to.

I'm not sure GP would entertain gluten idea beyond me just trying to cut it out. I keep being tested for diabetes / kidneys actually.

It literally was just a thought - could this actually be gluten? - as don't know much about it beyond my MILs diagnosis of intolerance. She wasn't coeliac and (I think she had the biopsy too?) But was told to do elimination diet and felt much better.

B12 v good, taking x2 3000 sprays vit v and some magnesium. Free from chocolatewinebiscuit if you're still reading confusedblush

Clarella Wed 25-Nov-15 18:33:28

Thanks freeworker, and all of you.

I discussed with a new GP I'd seen regarding possibly using contraceptive hormones to see if it helped the possibility of looking at gluten and she advised how to do so over a month.

I think I just needed to find out from those experienced what possible symptoms you could have with gluten issues.

I'm afraid, unless clearly having tummy issues, I've always been a bit hmmabout those avoiding and banging on about gluten. (Sorry! )

PrimalLass Wed 25-Nov-15 22:33:47

Here's a good link for understanding the thyroid-gluten thing. It's not necessarily linked to tummy troubles.

FTR, DD is gluten intolerant and I'm hypothyroid. She gets a sore stomach, sometimes vomits, gets pronounced nipples (she is 7 sad), gets dark streaks under her eyes, and pale poo. But is not coeliac apparently hmm

DP gets sore joints and digestive issues with gluten.

Clarella Thu 26-Nov-15 06:10:40

Thank you but what don't understand here though - my thyroid went years ago, 18 years ago.

So there's nothing for gluten to destroy?

FreeWorker1 Thu 26-Nov-15 08:45:29

Prima - that is a great article.

"In fact, the more I learn about gluten and its effects on the body, the more I think we’d all probably be better off not eating it. "

My specialist is a world expert in Non Coeliac Gluten Intolerance and sees a very wide range of people passing through his consulting room typically having spent years trying to figure out why they feel so ill and all of them not showing up as coeliac.

Gluten is a protein that humans never ate originally. Our gut is not designed to do so and in fact its only a matter of 10,000 year or since the human race started eating gluten containing grains. Our bodies have not evolved yet to deal with it yet and as wheat in particular has become a very dominant part of our diet more and more people become gluten intolerant. It gets worse with age as the year sof accumulated exposure stack up .

In my case it started as a 'mystery' about 25 years ago and eventually it caused me to give up work and I became almost bedridden. I had been seen and discharged by many consultants and had many tests but none came up with anything positive. It was somebody on MN who mentioned 'it might be something to do with gluten' that caused me to think about it and in desperation I did go on a strict gluten free diet.

My own consultant would agree with the figures that suggest 1/3 of people exhibit some degree of gluten sensitivity. He calls it a worldwide epidemic and is doing a multi-country study to show how endemic it is. He notes that in many rice based Asian countries gluten related conditions are rapidly increasing as Western diet penetrates their food chain. My wife spent some time in Japan and she now notes many young Japanese routinely eat pasta and of course bread based fast food chains are in every country in the world now.

Clarella - once you have developed an autoimmune condition it causes so much damage that it doesn't just stop at your thyroid which was probably your first and most obvious symptom. I have multiple symptoms and pain everywhere now but my bladder was the first and I now know 'bladder pain' is quite common in people who are gluten intolerant. Although I stopped eating gluten some years ago my immune system now triggers with a wide range of foods so its a constant battle and some days are good and some days are bad.

CMOTDibbler Thu 26-Nov-15 09:11:49

FWIW, I am coeliac, but my main symptom was joint pain and stiffness. I was diagnosed by a rheumatologist (he tested as his friend had just been diagnosed with the same symptoms).
After I was GF, I realised that things like my 'sensitive tummy', mouth ulcers, skin rashes and terrible fatigue had all gone as well.

Now, 17 years on, if I get glutened my first symptom is always joint pain

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