Literally Too Tired To Wait Any Longer - Help?

[tinylittlepotofjelly]

Hello everyone, 

 

I'm new here and have been reading through the forums for hours now, it is a pleasure to see so many knowledgable people in one place and to feel as though this might not all just be "in my head" as so many people have told me. 

 

I don't have a celiac diagnosis yet but I strongly suspect that I have an issue with gluten as this is the only thing I have found that fits all of the many symptoms that I have: 

 

- Constant stomach ache, often particularly bad after eating 

- Nausea (to the extent that by dinner time I sometimes can't face putting food in my body) 

- An almost constant dull headache (that sometimes progresses to a migraine) 

- Brain fog, brain fog, brain fog. This one is the worst for me - I feel like I can't think at all, I can't order my thoughts or follow instructions/remember information like I used to

- Constant exhaustion (I have started having to sleep for up to 2 hours during the day just to get through until I can go back to bed, even when I have slept for a solid 8 hours the night before) 

- Absolutely NO energy (I can't make it through a gym class anymore) 

- Constipation for three weeks at a time, followed by diahorrea, and then back to no bowel movements 

- Sinus infections

- Puffy face

- Red blotchy cheeks and dry, spotty skin

- Often swollen fingers with a rash (though this one comes and goes?)

- Inability to regulate body temperature (when it's a bit warm I am sweating and when it is a bit cold I am shivering and absolutely freezing)

- Easily out of breath (even after walking up the stairs which is unusual for me as I used to cycle daily and am a relatively fit person up until now) 

- Achey achey body - especially my lower back and my legs 

- Dizziness and fainting on two recent occasions

 

Does that sound familiar to people here? 

 

These symptoms have been mild for a long time now but about six weeks ago I had an inner ear infection and fainted. Since then they have got worse with each passing day. 

 

I got blood tests done three days ago which could take up to four weeks (!) to come back (i'm in the UK)... however, I'm nervous as I know blood work can be inconclusive/give false negatives and I feel like I can't go on like this much longer. I just can't take feeling this bad anymore. So my question is - is it worth waiting on the blood results before I change my diet or should I just take the gluten free plunge now and see if it makes a difference? I'm wary of starting because I believe they need to do a biopsy of the small intestine to give a diagnosis if the blood work is positive and I know it's necessary to have been eating gluten before that... however, that could be 8 weeks or more away from now and that is only if I get a diagnosis from the blood work!

 

Feeling quite confused about what best to do. Any advice would be so greatly appreciated as I feel quite alone in this just now. (I have a family who are quick to write everything i describe off to "stress" even though I know I'm not feeling stressed or unhappy at the moment at all - everything is good right now about from my health!). 

 

Thanks, Sarah x

[Lock]

All your symptoms are very familiar to me. I am in a similar situation. I need to decide whether to go gluten-free now or wait for conclusive testing. Reading all the posts on this forum I am concluding that they really need to come up with a better way to diagnose celiac. Making people stay on gluten is just cruel, especially reading about the children and babies.

 

I've been in this limbo for a few weeks now. It is a state of limbo and confusion. All I can say is YOU ARE NOT ALONE.

[defeatwheat]

Hello everyone, 

 

I'm new here and have been reading through the forums for hours now, it is a pleasure to see so many knowledgable people in one place and to feel as though this might not all just be "in my head" as so many people have told me. 

 

I don't have a celiac diagnosis yet but I strongly suspect that I have an issue with gluten as this is the only thing I have found that fits all of the many symptoms that I have: 

 

- Constant stomach ache, often particularly bad after eating 

- Nausea (to the extent that by dinner time I sometimes can't face putting food in my body) 

- An almost constant dull headache (that sometimes progresses to a migraine) 

- Brain fog, brain fog, brain fog. This one is the worst for me - I feel like I can't think at all, I can't order my thoughts or follow instructions/remember information like I used to

- Constant exhaustion (I have started having to sleep for up to 2 hours during the day just to get through until I can go back to bed, even when I have slept for a solid 8 hours the night before) 

- Absolutely NO energy (I can't make it through a gym class anymore) 

- Constipation for three weeks at a time, followed by diahorrea, and then back to no bowel movements 

- Sinus infections

- Puffy face

- Red blotchy cheeks and dry, spotty skin

- Often swollen fingers with a rash (though this one comes and goes?)

- Inability to regulate body temperature (when it's a bit warm I am sweating and when it is a bit cold I am shivering and absolutely freezing)

- Easily out of breath (even after walking up the stairs which is unusual for me as I used to cycle daily and am a relatively fit person up until now) 

- Achey achey body - especially my lower back and my legs 

- Dizziness and fainting on two recent occasions

 

Does that sound familiar to people here? 

 

These symptoms have been mild for a long time now but about six weeks ago I had an inner ear infection and fainted. Since then they have got worse with each passing day. 

 

I got blood tests done three days ago which could take up to four weeks (!) to come back (i'm in the UK)... however, I'm nervous as I know blood work can be inconclusive/give false negatives and I feel like I can't go on like this much longer. I just can't take feeling this bad anymore. So my question is - is it worth waiting on the blood results before I change my diet or should I just take the gluten free plunge now and see if it makes a difference? I'm wary of starting because I believe they need to do a biopsy of the small intestine to give a diagnosis if the blood work is positive and I know it's necessary to have been eating gluten before that... however, that could be 8 weeks or more away from now and that is only if I get a diagnosis from the blood work!

 

Feeling quite confused about what best to do. Any advice would be so greatly appreciated as I feel quite alone in this just now. (I have a family who are quick to write everything i describe off to "stress" even though I know I'm not feeling stressed or unhappy at the moment at all - everything is good right now about from my health!). 

 

Thanks, Sarah x

      Waiting four weeks for a blood test result is brutal. Sorry. Until I read twice I was going to say the blood test is quite reliable I would go with those results thinking you would have them in 2-3 days. See what kind of responses you get. I don't think the scope would change that much in 8 weeks. The blood test would change more quickly I  think, but that has been done. If the blood test comes back positive I personally don't think you need the scope. (Coming from one to had both but wishes I would have just taken the blood test result since they were both positive it was just a waste of time and money.)

      I can certainly relate to the fatigue and sinus infections. Those symptoms will improve if you have Celiac and follow the diet. My suggestion is to weigh your feedback and any info you can find and go from there. Best wishes.   

[ravenwoodglass]

Welcome to the board. Your story is all to famiiar to many of us.

If I remember correctly you can help with gluten-free foods in the UK if you have an 'official' diagnosis. I don't know how it works but if that is vital to you then do stay on gluten until all your testing is complete

 If you can ask to be put on a cancelation list for the biopsy. Then if someone else cancels their appointment at the last minute the doctor can slide you in.  You could also try asking the doctor if a return to negative on the blood work (if that is positive) along with resolution of symptoms on the diet would be enough to diagnose. Since they won't biopsy if the blood work is negative and the blood work is already drawn you could then start the diet right away.

There can be false negatives with both blood and biopsy so you do need to give the diet a strict shot after testing is done no matter what the results.

[0range]

Have you gotten tested for thyroid disease? The puffy face, inability to regulate body temperature, etc really stood out to me because these are hallmark thyroid disease symptoms and are what I suffered from before being diagnosed. Look into that along with celiac.

[GFinDC]

My last blood test results were ready the day after they took the blood!  It wasn't for celiac disease but still, it was ready that quick.  Waiting 4 weeks to get results is ridiculous.  I suggest calling every day and pestering them for a status and a revised date for the results.  The squeaky wheel gets the grease.

 

Your symptoms do sound like they could be celiac.  Can you check with the UK celiac disease association on their ideas?  They might be able to tell you if going through the full diagnostic process is worthwhile.

[tinylittlepotofjelly]

Thanks everyone - it's really nice to have some words of encouragement and feel like I'm not alone. As you will all be very aware it is a bit of a daunting process and as supportive as my family etc. try to be I feel like none of them really understand what I'm going through just now or just quite how bad it feels. 

 

Four weeks for a blood test is brutal. Other results come back in 3-7 days normally but apparently celiac has to sit for longer before they can test the results and also where I am apparently it needs to be sent away to a special lab. There's a chance it will come back in 2 weeks but I've been told it's likely to expect up to 4. I will indeed call them on a regular basis though so they don't forget about it - that's a very good idea! 

 

Orange - my thyroid was the first thing I had checked but it came back normal... I also got my blood count, vitamin D levels, liver and kidney function checked but they all came back normal too. Celiac is the only result I am waiting on now though they also took blood again to test for diabetes and glandular fever just incase (though they seem very unlikely!). 

 

I ended up going to the doctor again yesterday because I was feeling so frustrated and his advice was that it makes sense to start a gluten free diet now and see how I feel in 3 or 4 weeks time when I have my next appointment. From his perspective, if it is gluten that is making me ill I may as well come off it now (and not bother with the biopsy if the blood works come back positive) and if I don't feel better by the time I next see him then we can start looking at other options. So I went to the store last night and bought a range of gluten free flours, pasta, etc. so I'm not tempted otherwise and as of this morning I am going to try gluten free and see how it goes. 

 

I have a few more questions if that's okay though...

 

1. If i am testing a gluten free diet how careful do I need to be for it to work? I will stay well away from gluten containing food stuffs but do I need to be worried about cross contamination at this stage? And do I need to start raiding my makeup bag/toiletries? 

 

2. I've done a good search and I think I have a good idea of where gluten may be hiding in foods - are there any it took people a long time to work out that I should keep my eyes open for? And if I want to make sure I have gluten free toiletries what words on the label should I be avoiding? (I have never seen any toiletries brands that explicitly state 'contains gluten') 

 

3. How long should it take to start to feel differences? (I know this is different for everyone but basically I guess I'm asking if I stick with the gluten free diet for 3 - 4 weeks then should I have started to notice changes by the time I see the doctor again?)

 

Thanks in advance  - in the meantime I'll keep searching the forum for answers!  

 

Thanks so much again - here's wishing you all good health. Sarah x

[Lock]

 

1. If i am testing a gluten free diet how careful do I need to be for it to work? I will stay well away from gluten containing food stuffs but do I need to be worried about cross contamination at this stage? And do I need to start raiding my makeup bag/toiletries? 

 

2. I've done a good search and I think I have a good idea of where gluten may be hiding in foods - are there any it took people a long time to work out that I should keep my eyes open for? And if I want to make sure I have gluten free toiletries what words on the label should I be avoiding? (I have never seen any toiletries brands that explicitly state 'contains gluten') 

 

3. How long should it take to start to feel differences? (I know this is different for everyone but basically I guess I'm asking if I stick with the gluten free diet for 3 - 4 weeks then should I have started to notice changes by the time I see the doctor again?)

 

 

 

1. How careful do you need to be. For true celiacs/NCGS you need to be 100% careful. You may feel better at 90% gluten elimination, but there are subtle ways damage can still occur. If your immune system detects ANY gliadin whatsoever, it could crank out the antibodies that attack your intestine or other organs. So the technically correct answer is if you are really going gluten-free, it needs to be total.

 

But if you take this step be SURE you are certain you don't want to pursue a definite diagnosis through biopsy. If the blood test comes back negative, be sure you will still be motivated enough to stick with the gluten free plan. If you and your doctor are not completely convinced and there is any chance you want further testing, you should stay on gluten until all testing is done. I just finished this wrenching decision process myself. For me, my doctor displays enough understanding and authoritative certainty about it that I trust her and I'm going with the gluten-free recommendation, even without having had the biopsy. But this decision was not made lightly.

 

2. A huge issue that I'm about to tackle myself. Wooden spoons for example that you've used for years to stir pasta. Need to throw them out or keep them separated in your kitchen from your gluten-free utensils. I bought all Visions cookware on the theory that gluten might hide in the cracks and pores of metal pots and pans. I have told my husband he needs to decide whether to go gluten-free with me and make the whole kitchen gluten-free, or I will need to clean out the top shelf of the refrigerator and ban anything of his from my gluten-free zones.

 

3. How long? I noticed a huge mood improvement in 2 days, when I simply went 90% gluten-free, and off all sugar too. All anxiety and depression vanished like hitting a light switch. (I can't say for certain if it was the gluten or the sugar, probably both.)  But all my other symptoms have not changed yet. The doctor said that I can expect no real change in those for at least 4 months after COMPLETE gluten elimination. And that in some cases it can take 18 to 24 months to see real improvement. In my case, I am talking about severe body-wide eczema, body-wide muscle pain (fibromyalgia) joint pain, scleroderma skin changes, dry eyes, raynaud's (cold hands and feet) peripheral neuropathy (small nerve damage in hands and feet) multiple allergies and sensitivities, gas, belching, chest pain from GERD, brain fog, memory problems, leg swelling and reflex sympathetic dystrophy.  Quite a lot of damage over the years. No one can prove all of this is gluten-caused, but it will be very interesting to see what improves on the gluten-free diet.

 

Celiac can result in malabsorption of nutrients and the doctors do not standardly test for most of them, but supplementing on your own can be risky. Vitamins and minerals are about balance. You can over and under dose yourself unless you do a heck of a lot of studying up on the subject and know what you are doing. Lots of supplement "advice" on the internet (and even what doctors tell you!) is given in isolation.  "Oh if you have X, taking vitamin Y will fix you". It's not that simple. Most vitamins work in concert with other vitamins and lots of minerals.  It is best to get your nutrition through your food. However, it can be hard for someone with digestive issues to figure out a list of foods that provide everything you need and are compatible with your sensitive stomach!  So some judicious supplementation might be helpful. Also, you will need to beware of hidden gluten in vitamins and supplements, but it is worth reading and studying about nutrient deficiencies in case you are behind in some things and need supplements to catch up. The idea is that may speed up your recovery, but I'm not quoting science here it just seems logical.

 

The only down side to being diagnosed "unofficially" in my case or maybe in yours, is that I have not yet been referred to a nutritionist for detailed counseling. People with long time gluten issues can have multiple cross-sensitivities to many other foods. It can be hard to sort out all the things that may still cause you problems, for example, I know I am sensitive to cow's milk, so now I need to avoid all bovine dairy now in addition to gluten. However, milk is a main source of part of my vitamin D. How will I get my D?  That is one example. A nutritionist would help tell me what foods contain what nutrients and what foods are common sources of cross-senstiviities (without me having to do a bunch of allergy testing, which can be of questionable accuracy).

 

This is probably more information than you wanted. If it is overwhelming then just focus on de-glutenizing for now. A good quality all-around multi-vitamin that is gluten free probably won't hurt. Of course, don't do anything I suggest without okaying it with your doctor.

 

Good luck! 

[tinylittlepotofjelly]

1. How careful do you need to be. For true celiacs/NCGS you need to be 100% careful. You may feel better at 90% gluten elimination, but there are subtle ways damage can still occur. If your immune system detects ANY gliadin whatsoever, it could crank out the antibodies that attack your intestine or other organs. So the technically correct answer is if you are really going gluten-free, it needs to be total.

 

But if you take this step be SURE you are certain you don't want to pursue a definite diagnosis through biopsy. If the blood test comes back negative, be sure you will still be motivated enough to stick with the gluten free plan. If you and your doctor are not completely convinced and there is any chance you want further testing, you should stay on gluten until all testing is done. I just finished this wrenching decision process myself. For me, my doctor displays enough understanding and authoritative certainty about it that I trust her and I'm going with the gluten-free recommendation, even without having had the biopsy. But this decision was not made lightly.

 

2. A huge issue that I'm about to tackle myself. Wooden spoons for example that you've used for years to stir pasta. Need to throw them out or keep them separated in your kitchen from your gluten-free utensils. I bought all Visions cookware on the theory that gluten might hide in the cracks and pores of metal pots and pans. I have told my husband he needs to decide whether to go gluten-free with me and make the whole kitchen gluten-free, or I will need to clean out the top shelf of the refrigerator and ban anything of his from my gluten-free zones.

 

3. How long? I noticed a huge mood improvement in 2 days, when I simply went 90% gluten-free, and off all sugar too. All anxiety and depression vanished like hitting a light switch. (I can't say for certain if it was the gluten or the sugar, probably both.)  But all my other symptoms have not changed yet. The doctor said that I can expect no real change in those for at least 4 months after COMPLETE gluten elimination. And that in some cases it can take 18 to 24 months to see real improvement. In my case, I am talking about severe body-wide eczema, body-wide muscle pain (fibromyalgia) joint pain, scleroderma skin changes, dry eyes, raynaud's (cold hands and feet) peripheral neuropathy (small nerve damage in hands and feet) multiple allergies and sensitivities, gas, belching, chest pain from GERD, brain fog, memory problems, leg swelling and reflex sympathetic dystrophy.  Quite a lot of damage over the years. No one can prove all of this is gluten-caused, but it will be very interesting to see what improves on the gluten-free diet.

 

Celiac can result in malabsorption of nutrients and the doctors do not standardly test for most of them, but supplementing on your own can be risky. Vitamins and minerals are about balance. You can over and under dose yourself unless you do a heck of a lot of studying up on the subject and know what you are doing. Lots of supplement "advice" on the internet (and even what doctors tell you!) is given in isolation.  "Oh if you have X, taking vitamin Y will fix you". It's not that simple. Most vitamins work in concert with other vitamins and lots of minerals.  It is best to get your nutrition through your food. However, it can be hard for someone with digestive issues to figure out a list of foods that provide everything you need and are compatible with your sensitive stomach!  So some judicious supplementation might be helpful. Also, you will need to beware of hidden gluten in vitamins and supplements, but it is worth reading and studying about nutrient deficiencies in case you are behind in some things and need supplements to catch up. The idea is that may speed up your recovery, but I'm not quoting science here it just seems logical.

 

The only down side to being diagnosed "unofficially" in my case or maybe in yours, is that I have not yet been referred to a nutritionist for detailed counseling. People with long time gluten issues can have multiple cross-sensitivities to many other foods. It can be hard to sort out all the things that may still cause you problems, for example, I know I am sensitive to cow's milk, so now I need to avoid all bovine dairy now in addition to gluten. However, milk is a main source of part of my vitamin D. How will I get my D?  That is one example. A nutritionist would help tell me what foods contain what nutrients and what foods are common sources of cross-senstiviities (without me having to do a bunch of allergy testing, which can be of questionable accuracy).

 

This is probably more information than you wanted. If it is overwhelming then just focus on de-glutenizing for now. A good quality all-around multi-vitamin that is gluten free probably won't hurt. Of course, don't do anything I suggest without okaying it with your doctor.

 

Good luck! 

 

Lock - thank you so much for this detailed response. It's not overwhelming, it's wonderful. I just read your own story in this forum and it sounds like you are very knowledgable and also very brave - well done for making the decision to change your life now despite not having all the results, it sounds like it will make such a difference. I hope your family get onboard 100%!

 

Food wise I think I'm smart on being 100% gluten free, but I think I need to work out how to make sure I don't get cross-contamination (right now I have no money for new pans, kitchen equipment etc. so I will have to build up to cutting out cross-contamination in that regard once I get the money to buy bits and pieces) - I have quite a few social things planned in the next month because it's the end of my post graduate degree and there are celebrations planned so I will need to work out how to avoid being gluten-ed at those. It's the social aspect of things I find most daunting in that respect! How are you managing with that? 

 

I think for me I need to make the change now - I just can't wait any longer. I'm not sure how supportive my doctor really is - he was keen to mention it could just be IBS as I left his office (sure, because IBS causes body aches, numbness, headaches, mood swings... sometimes it feels like the medical profession just wants to put on any label and get you out their office!), HOWEVER, I trust myself that I can stick to it because I'm at a stage where I am risking a lot of things if I don't make the change. I'm currently coming to the end of a Masters Degree and about to start a PhD and I'm at a stage where if I don't get well again I'm jeapordising that opportunity that I have wanted for a long time. It's also really taken it's toll on my relationship as I am tired and unwell and moody almost all the time - I'm fortunate to have a very supportive partner but I think there is only so long he can take (this has been going on in some way or form for almost our whole 4 year relationship) and there is only so much I can bare to put him through. Plus, there is only so much I can bare to keep putting myself though - I am 26 but I feel like I have less energy than my 86 year old grandmother! 

 

Do you think it is worth cutting out sugar too? I have been wondering about that myself - I notice I don't always respond well to very sugary things or to alcohol, but i'm already finding one change a bit daunting. Ultimately I want to feel well again though, I think I can give up just about anything for that... 

 

Can I ask what mood issues you were experiencing? (It is my mood issues I wish would go away first as they make it much harder to cope with everything else!). That sounds like a lot of physical symptoms, I'm sorry you have had to struggle for so long. There's a lot things I wonder if they are connected to gluten too - it will be fascinating to see how things change. Please keep us updated - I will look out for your posts and your progress  

 

Is there any definitive way to know what vitamins you need? I tested that my Vit D levels were in the normal range... does that mean I'm probably okay? 

 

And lastly, I'm a bit cynical about nutritionists anyways as I've seen two in the last few years and always felt like I had learnt more from researching online than they knew themselves! But I can see from your post why speaking with one would be helpful. I think at this stage I would probably rather save up and pay to see one than keep putting myself through unwellness just to get a positive gluten result... I am hoping so much to see results from this gluten free diet. I have never wanted more to just know what is wrong and feel better! 

 

Good luck with your journey, I hope it is exciting and filled with pleasant surprises even if it might feel daunting right now. 

 

p.s - this is only my second day gluten free. I have been constipated for weeks and when it stops I get the big D and then go back to C again. This morning I had a fairly regular bowel movement - perhaps slightly less formed than what would be considered normal but not D either. Sorry this is probably TMI but I wonder if this is a sign somewhere... It might be too soon in which case perhaps this is wishful thinking, but fingers crossed! 

 

Sarah x