Post Diagnosis

[IveGotEffinCeliac]

So its been two weeks since I was diagnosed. Actually, I didn't really freak out at all. I was overjoyed to find out that all my seemingly random symptoms could all be linked to one disease. Two weeks in to the gluten free life, and I'm just now starting to feel overwhelmed.

I don't know if celiac has any effect on mental cognition, but mine is definitely off. I'm unable to think as quickly and react like I used to. A very general and generic way to describe this is that I've been feeling slightly "stupified" for the last year or so. Obviously, I can't speak for everyone with celiac, but losing any mental functionality has me petrified.

About one year ago, long before I'd ever heard of celiac, every single joint in my body began to crack. Not just an occasional crackle or pop here and there... This is litterally every joint in my entire body from my fingers to my hips. Most noticable is knees and ankles, I would venture to guess because of the larger stresses they encounter. The GI told me this is likely from being unable to absorb calcium. On that note, he gave me an idea of his interpretation of the severity of my celiac just based on pathology. Basically he told me that in his experience with 1 being very mild, and 5 being the worst he's ever seen, that I was a 4.

The downhill journey for me physically began three years ago. Over that 3 year period I have gone from having a swimsuit model body, to something that I don't even recognize. My muscle weakness (especially in my legs and shoulders) is almost comical. It's like I'm weaker than my 4 year old niece. Sometimes just holding my arms up in a certian position takes every ounce of stamina I've got.

I'm 36 and have no idea how long I went undiagnosed.

[ravenwoodglass]

Welcome, Things will get better. It can take some time to heal so try to be patient with your body. Your in the right place to learn what you need to do to heal and to keep yourself safe. Many of us do go through a bit of withdrawl and it can take some time to ferret out all the places gluten can be. Some sublingual B12 may help a bit with healing the memory issues. A good gluten free vitamin supplement is also a good idea.

Ask any questions you need to and I hope you heal soon.

[Skylark]

Hi, welcome.

You're trying to reverse years of damage. It will reverse at least partly, maybe completely, but it will take a lot longer than a couple weeks. Your body has to rebuild your intestines, then work on everything else as nutrition starts coming in.

Celiac absolutely effects cognition, and makes some people depressed or anxious. We also tend towards hypothyroidism so if you stay foggy you should make sure your doctor checks your TSH. The "brain fog" is partly nutrient deficiency, and partly autoimmunity. All the autoimmune diseases seem to make people foggy and tired. The good thing with celiac is that the diet makes the autoimmunity go silent and the symptoms reverse.

Hang in there, and feel free to post and ask all the questions you need. The folks on this board are amazing.

[IveGotEffinCeliac]

Thank you both for responding. I'm sticking in there. Meeting with a nutritionist next week, and we'll see how things are in six months.

[T.H.]

I hope the improvements are just spectacular for you!

I know for myself, my memory, emotional control, and depression improved significantly on a gluten free diet. I also had joint and muscle pain and that improved significantly as well. On this gluten free path- which sounds a little cheesy, but hey, I'm leaving it in - I've been amazed how many things I just took for granted as just being 'me' that have turned out to be gluten doing bd things to me. I sincerely hope that you find the same thing!

[IveGotEffinCeliac]

  On 7/5/2010 at 5:40 PM, T.H. said:

I hope the improvements are just spectacular for you!

I know for myself, my memory, emotional control, and depression improved significantly on a gluten free diet. I also had joint and muscle pain and that improved significantly as well. On this gluten free path- which sounds a little cheesy, but hey, I'm leaving it in - I've been amazed how many things I just took for granted as just being 'me' that have turned out to be gluten doing bd things to me. I sincerely hope that you find the same thing!

Thank you! I'm actually most worried about my overall brain function. Its a real dissapointment that my body has changed so dramatically over the last couple years but truthfully, I can't see a future for myself without total and complete restoration of my mind. Without that, my intestines and body don't mean much at all.

I'm staying positive, and I'm very grateful to have found this website and everyone here.

[ravenwoodglass]

  On 7/5/2010 at 10:36 PM, IveGotEffinCeliac said:

Thank you! I'm actually most worried about my overall brain function. Its a real dissapointment that my body has changed so dramatically over the last couple years but truthfully, I can't see a future for myself without total and complete restoration of my mind. Without that, my intestines and body don't mean much at all.

I'm staying positive, and I'm very grateful to have found this website and everyone here.

Please do stay positive. It may take a while but your brain function should return to at least almost normal levels. Before diagnosis my brain was fudge, if you held up a fork I couldn't tell you what it was. My memory was so bad I couldn't even read anymore because I would forget a sentence as soon as I read it. It took a while but my brain actually functions now. Not only can I read but I can also remember what I read. I have even gone back to school to finish off the last couple of classes I need for my degree. If I could recover anyone can. It just takes time and being strict with the diet.

[LMM]

Hang in there! My teenage daughter was diagnosed and has been 5 weeks gluten free and she is still working out the symptoms. All are improved and the diet is really getting so much easier. A lifesaver for me has been the Cecelia's Grocery Shopping Handbook. Another Celiac recommended it to me and it has been a lifesaver, the dietician didn't even give me gluten free shopping advice that could compare. I googled it and then found it at my local grocery.

Best of luck for improved health-This is a great place for advice and support!

[Skylark]

  On 7/5/2010 at 10:36 PM, IveGotEffinCeliac said:

Thank you! I'm actually most worried about my overall brain function. Its a real dissapointment that my body has changed so dramatically over the last couple years but truthfully, I can't see a future for myself without total and complete restoration of my mind. Without that, my intestines and body don't mean much at all.

I'm staying positive, and I'm very grateful to have found this website and everyone here.

For me, having a really clear mind requires a pretty good chelated multivitamin/mineral supplement and a couple double-strength fish oil capsules a day. If I slack on the supplements I start to get insomnia, brain fog, and some mild depression.

[IveGotEffinCeliac]

  On 7/6/2010 at 1:29 AM, Skylark said:

For me, having a really clear mind requires a pretty good chelated multivitamin/mineral supplement and a couple double-strength fish oil capsules a day. If I slack on the supplements I start to get insomnia, brain fog, and some mild depression.

Thank you! I've got the multi sorted out. I've been taking Nature's Plus Source of Life (iron free version) for the last 3 years. I'm not going out on a limb when I say this is the very best multi out there. It's a bit pricey, but well worth it. And gluten free! I haven't even had a cold in well over two years. Any recommendations on a good fish oil suppliment?

[ravenwoodglass]

  On 7/6/2010 at 2:43 PM, IveGotEffinCeliac said:

Thank you! I've got the multi sorted out. I've been taking Nature's Plus Source of Life (iron free version) for the last 3 years. I'm not going out on a limb when I say this is the very best multi out there. It's a bit pricey, but well worth it. And gluten free! I haven't even had a cold in well over two years. Any recommendations on a good fish oil suppliment?

Just a quick note, do make sure that the one you take doesn't contain barley grass or wheat grass. Those are considered gluten free but many of us react to them. Especially if your new to the diet it is best to avoid those in juices or supplements.

[Skylark]

Glad you found a good multi. People are so reluctant to spend some money on a vitamin. They don't realize their One-A-Day goes straight through the gut and hardly gets absorbed. I've been talking the double strength Nature's Bounty fish oil. It's been independently tested and comes up free of PCBs and mercury.

[Matisse]

  On 7/4/2010 at 11:10 PM, IveGotEffinCeliac said:

So its been two weeks since I was diagnosed. Actually, I didn't really freak out at all. I was overjoyed to find out that all my seemingly random symptoms could all be linked to one disease. Two weeks in to the gluten free life, and I'm just now starting to feel overwhelmed.

I don't know if celiac has any effect on mental cognition, but mine is definitely off. I'm unable to think as quickly and react like I used to. A very general and generic way to describe this is that I've been feeling slightly "stupified" for the last year or so. Obviously, I can't speak for everyone with celiac, but losing any mental functionality has me petrified.

About one year ago, long before I'd ever heard of celiac, every single joint in my body began to crack. Not just an occasional crackle or pop here and there... This is litterally every joint in my entire body from my fingers to my hips. Most noticable is knees and ankles, I would venture to guess because of the larger stresses they encounter. The GI told me this is likely from being unable to absorb calcium. On that note, he gave me an idea of his interpretation of the severity of my celiac just based on pathology. Basically he told me that in his experience with 1 being very mild, and 5 being the worst he's ever seen, that I was a 4.

The downhill journey for me physically began three years ago. Over that 3 year period I have gone from having a swimsuit model body, to something that I don't even recognize. My muscle weakness (especially in my legs and shoulders) is almost comical. It's like I'm weaker than my 4 year old niece. Sometimes just holding my arms up in a certian position takes every ounce of stamina I've got.

I'm 36 and have no idea how long I went undiagnosed.

By any chance do you have hypermobility in your joints (double jointed)?

[IveGotEffinCeliac]

  On 7/6/2010 at 6:15 PM, Skylark said:

Glad you found a good multi. People are so reluctant to spend some money on a vitamin. They don't realize their One-A-Day goes straight through the gut and hardly gets absorbed. I've been talking the double strength Nature's Bounty fish oil. It's been independently tested and comes up free of PCBs and mercury.

I'll find Nature's bounty fish oil. Thank you!

[India]

Hello there... I love your name

I've only recently started posting on here but I've been lurking for a while. I've had mild problems with hypermobile joints since I was a teenager but four years ago, I developed repetitive strain injury (a risk for hypermobile people) in my arms - this quickly progressed to being muscle tension/pain, muscle weakness and joint pain across my body. On bad days, I can't hold my arms up either. I manage it with physio, exercise and using voice recognition software at work.

I realised last summer that I have coeliac disease and finally had a medical diagnosis in January. I'm not sure if my pain is coeliac-related - I've been gluten-free for six months and so far, I've not seen an improvement in this area (or in most of my coeliac symptoms). However, I have read posts by other people with muscle and joint problems who have seen improvements, so hopefully I - and you - will feel better eventually.

Best wishes,

Allie

[ravenwoodglass]

  On 7/7/2010 at 1:18 PM, India said:

I realised last summer that I have coeliac disease and finally had a medical diagnosis in January. I'm not sure if my pain is coeliac-related - I've been gluten-free for six months and so far, I've not seen an improvement in this area (or in most of my coeliac symptoms). However, I have read posts by other people with muscle and joint problems who have seen improvements, so hopefully I - and you - will feel better eventually.

Best wishes,

Allie

Allie, you should be getting some relief by now from your celiac symptoms. Have you checked all meds and supplements for gluten? Are you eating mostly a whole food diet without a bunch of processed stuff? Have you eliminated dairy? Do you consume stuff with Codex wheat starch? If you do stop. Have you done the things you need to do to eat safely at home? For example, if you live with gluten eaters you need your own dedicated toaster, jellies, nut butter, butter, mayo etc that are 'double dipped' by others can be contaminated and keep us reactive. If you have any questions do feel free to ask. Do also make sure if you have taken all the precautions needed that you let your doctor know as something else may be going on in addition to the celiac.

[Matisse]

[quote I've had mild problems with hypermobile joints since I was a teenager but four years ago, I developed repetitive strain injury (a risk for hypermobile people) in my arms - this quickly progressed to being muscle tension/pain, muscle weakness and joint pain across my body. On bad days, I can't hold my arms up either. I manage it with physio, exercise and using voice recognition software at work.

/quote]

Hi Allie,

I asked about hypermobility because there is a disorder in which hypermobile joints are the most visible sign. It's called Ehlers-Danlos Syndrome, Hypermobile Type, and can cause joint and muscle pain, as well as muscle weakness. Some doctors diagnose it as Joint Hypermobility Syndrome, but the physicians and researchers most knowledgeable about this disorder believe it a type of Ehlers Danlos Syndrome (EDS). EDS has 3 major types. The problem with the Joint Hypermobility Syndrome diagnosis is that it's viewed as only a joint problem when in fact it has systemic signs and symptoms because it's a disorder of collagen and collagen is just about everywhere in our bodies. The primary NIH researcher on EDS is finding that people with EDS have a higher incidence of autoimmune disorders including celiac. If your symptoms are not improving with a gluten free diet it's possible the problem is more related to hypermobility than celiac. I obviously don't know but perhaps you'd want to do a web search and see if it fits for you. It's estimated that only about 20% of people with EDS are diagnosed, and doctors are woefully uninformed about the disorder, so many, many people have the disorder and don't know it.

Matisse

[IveGotEffinCeliac]

  On 7/7/2010 at 1:18 PM, India said:

Hello there... I love your name

I've only recently started posting on here but I've been lurking for a while. I've had mild problems with hypermobile joints since I was a teenager but four years ago, I developed repetitive strain injury (a risk for hypermobile people) in my arms - this quickly progressed to being muscle tension/pain, muscle weakness and joint pain across my body. On bad days, I can't hold my arms up either. I manage it with physio, exercise and using voice recognition software at work.

I realised last summer that I have coeliac disease and finally had a medical diagnosis in January. I'm not sure if my pain is coeliac-related - I've been gluten-free for six months and so far, I've not seen an improvement in this area (or in most of my coeliac symptoms). However, I have read posts by other people with muscle and joint problems who have seen improvements, so hopefully I - and you - will feel better eventually.

Best wishes,

Allie

Thank you. I'm sure with 100% compliance to the gluten free lifestyle, we'll both feel better. At least I'm counting on that. Stay positive!

[India]

  On 7/7/2010 at 9:13 PM, ravenwoodglass said:

Allie, you should be getting some relief by now from your celiac symptoms. Have you checked all meds and supplements for gluten? Are you eating mostly a whole food diet without a bunch of processed stuff? Have you eliminated dairy? Do you consume stuff with Codex wheat starch? If you do stop. Have you done the things you need to do to eat safely at home? For example, if you live with gluten eaters you need your own dedicated toaster, jellies, nut butter, butter, mayo etc that are 'double dipped' by others can be contaminated and keep us reactive. If you have any questions do feel free to ask. Do also make sure if you have taken all the precautions needed that you let your doctor know as something else may be going on in addition to the celiac.

Thanks for your reply. I'm afraid I've only just seen this message - I'm having some trouble with setting things on up here exactly as I need them.

I've checked all my meds, supplements, toiletries etc and replaced lots of kitchenware. I went gluten-free in January after my biopsy but I've known since last summer that I have coeliac disease, so I've read an awful lot about this. I don't eat wheat starch and my house is gluten free. I was glutened a couple of months ago at a friend's house and as she'd been incredibly careful, I imagine it was caused by a tiny amount of the evil stuff - which I hoped this was a sign at least that I was doing well at ruling out gluten at home. My diet since diagnosis has been incredibly healthy, apart from too much soda and chocolate (to keep myself going - no energy). I can't tolerate corn or soy, so I don't eat gluten-free junk food. I've given up dairy and sodas and I'm now trying an elimination diet that is so far not a success.

My doctor seems convinced that my tiredness and brain function problems are a symptom of depression. I'm 100% certain that they are not, based on past experience and the way these symptoms have developed. He's not terribly interested in my continuing GI problems I have a gastro appointment in September but I've read that maybe seeing an endocrinologist would help.

[India]

  On 7/8/2010 at 2:59 AM, Matisse said:

[quote I've had mild problems with hypermobile joints since I was a teenager but four years ago, I developed repetitive strain injury (a risk for hypermobile people) in my arms - this quickly progressed to being muscle tension/pain, muscle weakness and joint pain across my body. On bad days, I can't hold my arms up either. I manage it with physio, exercise and using voice recognition software at work.

/quote]

Hi Allie,

I asked about hypermobility because there is a disorder in which hypermobile joints are the most visible sign. It's called Ehlers-Danlos Syndrome, Hypermobile Type, and can cause joint and muscle pain, as well as muscle weakness. Some doctors diagnose it as Joint Hypermobility Syndrome, but the physicians and researchers most knowledgeable about this disorder believe it a type of Ehlers Danlos Syndrome (EDS). EDS has 3 major types. The problem with the Joint Hypermobility Syndrome diagnosis is that it's viewed as only a joint problem when in fact it has systemic signs and symptoms because it's a disorder of collagen and collagen is just about everywhere in our bodies. The primary NIH researcher on EDS is finding that people with EDS have a higher incidence of autoimmune disorders including celiac. If your symptoms are not improving with a gluten free diet it's possible the problem is more related to hypermobility than celiac. I obviously don't know but perhaps you'd want to do a web search and see if it fits for you. It's estimated that only about 20% of people with EDS are diagnosed, and doctors are woefully uninformed about the disorder, so many, many people have the disorder and don't know it.

Matisse

Hi Matisse, and thanks for your reply. I'm afraid I've only just seen this message - I'm having some trouble with setting things on up here exactly as I need them.

I'm fascinated by your suggestion as I have looked into EDS in the past, both for myself and for a member of my family. I certainly have many of the symptoms (including a mild scoliosis I only found out about in my 20s after a minor car crash in the US - we don't seem to check for it here in the UK). I'm definitely going to look into links between EDS and coeliac disease - cheers.