Help! Unexplained Scary Symptoms.

[JessicaW]

I am a 23 year old mother of two. Always generally in good health. Until following the birth of my 2nd son this past July. I was fine after the birth but around 6 months later developed a weird numbness in some of my fingers. This frightened me to say the least and i was overcome by a huge amount of neurological symptoms. Twitching, weakness, burning etc. Saw neurologist, had mri and diagnosed stress. Symptoms passed. This was then followed by a bowel blockage after i didnt go the toilet for ten days. I have always been unexplainably constipated. I also get massive stomach spasms, which feel like a baby moving around! Since then my muscles have become more and more fatigued. I can barely hang one towel on the line, cant ride my bike, stir some cooking like cookie dough. Stairs are a killer. My fingers are also always looking wrinkled like when u have a bath. Not dehyration. They swell up for a second, then go back down. I wake up stiff and in pain, which subsides. I also have extreme diffuse hairloss since my son has been born.

I have visited a specialist gp. All my antibody tests for arthritis and lupus etc were negative. I have no bloodwork that leads them in any direction. I have iron def, ferritin 13 and borderline b12 defic. 154. Range is 145 - 600 or so. I am taking iron and my overall tiredness has subsided but not my muscle fatigue and other sypmtoms.

My dads sister has celiac disease confirmed by biopsy. My children are both lactose intolerant and i also suspect cows milk protein intolerant. Both vomitted, never slept and screamed until taken off ALL dairy not just put onto lactose free foods, drinks.

Just frightened and wondering where to go from here. I have done a "in the box" celiac IgA sensitivity test which came out negative. Im afraid i do have some undiagnosed serious disorder but at the moment the docs are saying not enough proof. Im grasping at straws here i know. Any opinions would be amazing. sorry to rant.

[Kay DH]

Your symptoms are very suggestive of gluten intolerance. Even if you had the Celiac Panel blood test and it came back negative, you could still be intolerant or sensitive to gluten. It would be good to have all of the gluten tests run before you went off gluten, otherwise you commonly get false negatives. If gluten is the or a culprit, then it probably wouldn't take more than a few days of gluten-free to feel improvements. gluten-free is not easy in that gluten is in very many processed foods, hidden as hydrolyzed vegetable protein, modified food starch, and other manifestations. I have been gluten-free since getting the flu last fall; all of my tests have been negative but even cc (cross contamination) from gluten-free food being grilled on a surface that was used for breading, "processed in a plant that also processes wheat...", etc., makes me ill. After getting the flu I had severe joint pain, muscle aches, brain fog, lethargy, D and other GI problems, etc. After going gluten-free my joint inflammation left after 1.5 months, the GI problems resolved within a week. You are in a tough place, particularly not knowing causes and if there is a fix. We've been there. It is good that you have the strength and resolve to find your cure.

[Kay DH]

A couple of other points come to mind. You could of course have multiple sensitivities, such as to dairy products. Peripheral neuropathy can be associated with Celiac, actually there are a mess of symptoms associated with gluten intolerance. Other symptoms can include mood swings and depression; gluten can affect your whole body. Gluten intolerance can start with stresses to your system, such as flu virus in my case, and perhaps the physical and chemical changes you undergo during pregnancy. I was talking with a doctor friend of mine a few days ago and she said "Celiac seems to run in families." I replied that it is genetic. She said they really didn't study it in medical school beyond mentioning it. A reason why it is so underdiagnosed; of the estimated 1 in 133 that have Celiac and many more that are allergic or sensitive, very few are diagnosed.

[ravenwoodglass]

Your onset of symptoms and the symptoms are very familiar to me. Your B12 levels are really quite low so I hope you are supplementing with sublingual B12. After you are done testing I hope you will give the diet a shot no matter what the results.

[myreggie33]

I have almost all of those symptoms! I am 24 mother of 2 also and just posted a very similar post. It's so scary and you think your losing your mind! You feel like NO ONE believes you. I swear my boyfriend probably think I'm so lazy becuase I never have the stregth or energy to do ANYTHING. I get tired SO fast. Even walking up stairs and I'm not a BIG person at all! I forget things I work and randomly even feel like i'm drunk when I haven't had ANYTHING to drink! I don't think your crazy and i'm sorry to say I can't tell you for sure if it's gluten becuase I don't know much about it and i'm waiting for my post to get on here so I can get some answers myself! But I can totally relate and I hope that that is ALL that is wrong with us.. becuase I would like to start eating better anyways...Please feel free to e mail me if you want someone to talk to about symptoms... becuase I know exactly what your going through and your just about the same age. reginarussell33@yahoo.com

Reggie

[JessicaW]

Yes i do believe everyone thinks i am lazy, or a complainer. My doctor has suggested seeing a psychologist. I know with all my heart something is wrong and i have never felt this way in my life until now. I thought or more hoped that i may have a thyroid problem as my symptoms are also very similar but my tsh level came back normal. Have you yourself had any tests done? All i know is i desperatly want to feel better and am so afraid something is very very wrong.

I am not taking b12 subs as my doctor told me my range is acceptable. But on my pathology form it suggests supplementing. Do you have any reccommendations about b12 sublinguals? i have heard conflicting info about different types etc.

[Looking for answers]

I thought or more hoped that i may have a thyroid problem as my symptoms are also very similar but my tsh level came back normal. Have you yourself had any tests done?

Like Celiac Disease, Thyroid problems are often difficult to diagnose, especially through a GP. My TSH levels are "perfect" (as my docotr called them), but when I pushed him to test my entire thyroid panel, it turned out my T3 levels are low. T3 is the active hormone, which is converted from T4, the stored form of thyroid hormone in the body. For some reason, my body isn't converting T4 into T3 as it should. Low T3 levels cause fatigue, weight gain, etc. Whether or not this could be a possibility for you, I don't know, but I'm sharing this story as another example of how proactive you have to be to get proper medical care. .

[ravenwoodglass]

Yes i do believe everyone thinks i am lazy, or a complainer. My doctor has suggested seeing a psychologist. I know with all my heart something is wrong and i have never felt this way in my life until now. I thought or more hoped that i may have a thyroid problem as my symptoms are also very similar but my tsh level came back normal. Have you yourself had any tests done? All i know is i desperatly want to feel better and am so afraid something is very very wrong.

I am not taking b12 subs as my doctor told me my range is acceptable. But on my pathology form it suggests supplementing. Do you have any reccommendations about b12 sublinguals? i have heard conflicting info about different types etc.

The best kind of B12 sublingual is the one that starts with methy rather than cyan in a lot of folks opinion. I take ones by Country Life but there are other good gluten free brands. I agree with the pathology report that you should be supplementing. Your doctor sounds like many of mine who was insistant that I was depressed and nothing was physically wrong even though my symptoms were incredible and involved many body systems before I was diagnosed. Even the neurologist who found the brain lesions told me they meant nothing and I still have some residual damage that I might not have if he had realized that UBO or unidentified bright objects were diagnostic of celiac disease.

We know when something is wrong and after all your testing do try the diet. The advice to have your T3 and T4 levels checked is also good advice.

[frieze]

Whaat was your TSH? That B12 is very low, since you are symptomatic you should endeavor to get it over 500. the TSH should be under 3.5....and, again, since you are symptomatic, rx may be nec even at that level. good luck

[Natalya]

In regards to the thyroid, as I have already posted this "essay" on this site, I think you may have both Hashimoto (hypothyroid) and celiac decease. OFTEN, THESE TWO COME TOGETHER UNDER THE AUTOIMMUNE UMBRELLA. As I mentioned in my "About Me," ONCE YOU HAVE ONE AUTOIMMUNE DESEACE, YOU'RE VERY LIKELY TO DEVELOP ANOTHER!!!

Many of your symptoms sound similar to mine. And my Gosh, how frustrating it is when all a GP can suggest is seeing a psychiatrist!

I suggest you check your thyroid ANTIBODIES as soon as possible. Screw the "complete" T-4, T-3, and TSH tests, as they show nothing. Same as with celiac, tests only show abnormal results when thyroid gland has been significantly damaged and is unable to function well. If the antibodies are increased, but other thyroid counts are within the range, still insist to be put on Synthroid (thyroid hormone) - the minimal amount (25mg). Say you just want to try it and see how you feel.

I can't describe how happy I am to have gotten my life back after tons of symptoms similar to yours have been gone. Especially the chronic fatigue, which was killing me the most. The very same day I started Synthroid, it was miraculously gone!!! The problem is few doctors are willing to prescribe thyroid medication to patients with similar symptoms. I literally burst into tears in doctor's office when I was told once again my test was OK. I was lucky though to have seen an understanding doctor who agreed to try Synthroid.

Soon after I started Synthroid, I went on elimination diet, and the rest of the symptoms were gone. I still happen to eat gluten now and then because I'm still new to this, after which I immediately get sick for days.

Good luck!

[Ahbee]

Your B-12 is awfully low. Mine was 286 when I suddenly stopped walking one day and lost the use of my right arm. For 8 months I never new when I was going to be able to walk. All MRIs were fine. Your symptoms are so close to mine. I was sent on my way by 4 neurologists and my doc that I had for 8 years. They felt this was mental. I found a doctor that believed in me. She started me on several medications and B-12 shots. I have b-12 shots every 2 weeks. After my first few shots, I began to have more energy. I am now diagnosed with pernicious anemia (look it up on web md), osteopenia, diabetes, Celiacs, mild cognitive impairment, and gluten ataxia (self diagnosis, google it). I know I will always struggle. I have found out great info from these forums. They are a life saver. Stay connected. Ahbee

[ravenwoodglass]

Your B-12 is awfully low. Mine was 286 when I suddenly stopped walking one day and lost the use of my right arm. For 8 months I never new when I was going to be able to walk. All MRIs were fine. Your symptoms are so close to mine. I was sent on my way by 4 neurologists and my doc that I had for 8 years. They felt this was mental. I found a doctor that believed in me. She started me on several medications and B-12 shots. I have b-12 shots every 2 weeks. After my first few shots, I began to have more energy. I am now diagnosed with pernicious anemia (look it up on web md), osteopenia, diabetes, Celiacs, mild cognitive impairment, and gluten ataxia (self diagnosis, google it). I know I will always struggle. I have found out great info from these forums. They are a life saver. Stay connected. Ahbee

Ahbee, keep the faith. I had severe cognitive impairment and even had trouble talking let alone walking and also lost the ability to even read. I couldn't remember what I read from sentence to sentence. It has been 8 years now since diagnosis but I recovered to the extent that I am now back in college at the ripe old age of 54 and getting A's and B's. I will finally in 5 months have my diploma. Don't give up with even baby steps it is surprising how far you can go.

[JessicaW]

So what on earth do i do? I have seen numerous doctors and just feel like i make myself look like a hypochondriac going from doc to doc. My doc says b12 is fine and cant be causing my symtpoms. I also have iron deficiency. serum ferritin of 13. My doctor says i should see the psychologist for treatment of somatisation disorder and then if after doing that for a while my hairloss, which is only one of many many complaints and certainly not the scariest, doesnt stop then i should see a dermatologist. But all my tests have come back clear and he really stresses that enough tests have been done. the more i go in there asking the more he thinks i should see the psych. i love my doc so much he is nicest guy, he isnt being unhelpful but just truley believes that this is the problem.

[gf-soph]

So what on earth do i do? I have seen numerous doctors and just feel like i make myself look like a hypochondriac going from doc to doc. My doc says b12 is fine and cant be causing my symtpoms. I also have iron deficiency. serum ferritin of 13. My doctor says i should see the psychologist for treatment of somatisation disorder and then if after doing that for a while my hairloss, which is only one of many many complaints and certainly not the scariest, doesnt stop then i should see a dermatologist. But all my tests have come back clear and he really stresses that enough tests have been done. the more i go in there asking the more he thinks i should see the psych. i love my doc so much he is nicest guy, he isnt being unhelpful but just truley believes that this is the problem.

Your dr can be the nicest guy in the world, but if he isn't helping to get you well then he is worth nothing to you. Drs can be lovely people and still be WRONG!

I had a nice old dr for a while who neglected my care so much I almost ended up with permanent neurological damage from low B12 - mine was 88 at one point and I had developed a tremor in my leg from it, a hematologist I saw later was horrified! The crap old GP gave me a couple of B12 injections when I came in, but took no further interest and didn't make a plan for injections to get my levels up. He also gave me an iron injection and sent me on my way straight after, a later GP was horrified as there is a relatively high risk of anaphalaxis after the first injection, and I should have been under drs care for at least half an hour.

So, I know what it's like to have a nice GP who is also incompetent.

Your B12 is too low. The reference ranges for most labs are just too low, for me, anything under 200 I get definite and disabling symptoms, anything under 300 I feel generally off and unwell. In other countries the recommended minimums can be as high as 500, so don't listen to them when they say 145 is fine. I can't emphasis enough that they are wrong!!

What country are you in? Here in Australia you don't even need a prescription for B12 injections. If your GP won't humour you, can you get a new GP and turn up with the B12 and get them to do it?

Why not post the general area where you live and see if someone here can recommend a more knowledgable dr?

If you aren't taking sublingual B12 already, get it now. It will take longer to build up than the shots, but it's better than nothing and will help.

Also, your iron is too low, the low ferratin is an indication that your body has been using up your stored iron, and it's being depleted. Start taking iron, even if you have to build up slowly as it can be rough on the system.

I have had both iron and B12 deficiency, and it can make you feel all kinds of ill. Don't accept their brush-offs, if you are low in both key nutrients, how on earth would you feel well??

I hope you are able to find a good gp. I can credit a lucky chance appointment with my current GP 2 years ago with all improvements I have had, it has made such a difference to have someone who is on your side!

[Kay DH]

I did not go off gluten last fall because of my GI symptoms. I went off it because I suddenly developed very stiff joints in my hands, enough that I barely noticed my GI, brain fog, lethargy, mood, and other symptoms. I went to a rheumatologist, and all he said was to take Alleve and if it gets worse then..., he then went into detail on the cardiac ablation that he had and his knee problems. I went gluten-free because I had to research inflammatory arthritis on my own and read that gluten can cause/increase a lot of different symptoms. The arthritis and other problems went away after going gluten-free. All my tests have been negative, except for the HLA-DQ8 that my (ex) GI dismissed as unimportant. That said, hopefully you can get a new and better doctor and better testing. Can you go to a nutritionist for help on elimination diets and if your diet is deficient or can be helped? Once you are done with gluten testing then you can try the gluten-free diet, even if all tests are negative. There are commonly other food sensitivities, even if those tests are negative. You are in a difficult place, but you have the power and resources to get back. We've been there, and it is so much better once it is done.

[etbtbfs]

I am a 23 year old mother of two. Always generally in good health. Until following the birth of my 2nd son this past July. I was fine after the birth but around 6 months later developed a weird numbness in some of my fingers. This frightened me to say the least and i was overcome by a huge amount of neurological symptoms. Twitching, weakness, burning etc. Saw neurologist, had mri and diagnosed stress. Symptoms passed. This was then followed by a bowel blockage after i didnt go the toilet for ten days. I have always been unexplainably constipated. I also get massive stomach spasms, which feel like a baby moving around! Since then my muscles have become more and more fatigued. I can barely hang one towel on the line, cant ride my bike, stir some cooking like cookie dough. Stairs are a killer. My fingers are also always looking wrinkled like when u have a bath. Not dehyration. They swell up for a second, then go back down. I wake up stiff and in pain, which subsides. I also have extreme diffuse hairloss since my son has been born.

I have visited a specialist gp. All my antibody tests for arthritis and lupus etc were negative. I have no bloodwork that leads them in any direction. I have iron def, ferritin 13 and borderline b12 defic. 154. Range is 145 - 600 or so. I am taking iron and my overall tiredness has subsided but not my muscle fatigue and other sypmtoms.

My dads sister has celiac disease confirmed by biopsy. My children are both lactose intolerant and i also suspect cows milk protein intolerant. Both vomitted, never slept and screamed until taken off ALL dairy not just put onto lactose free foods, drinks.

Just frightened and wondering where to go from here. I have done a "in the box" celiac IgA sensitivity test which came out negative. Im afraid i do have some undiagnosed serious disorder but at the moment the docs are saying not enough proof. Im grasping at straws here i know. Any opinions would be amazing. sorry to rant.

Hairloss and weakness can be indicators of a thyroid problem. Did the specialist GP you went to, test for out-of-range TSH, FT3, and/or FT4? Did he check for Thyroid Peroxidase (TPO) and/or Thyroglobulin (TG) antibodies? Thyroid antibodies scream "Hashimoto's", and gluten is a well-known trigger for Hashi's.

I don't know just how good your GP is, but my experience is that most of them aren't even close to the state of the art on endocrine problems. Strangely enough, the endocrinologists I've seen seem to be even worse; their skills are stuck somewhere around 1950.

If you decide to check out the thyroid angle, be very picky about who you pick.

[Chakra2]

Jessica -- those do sound like scary symptoms. I now think I have had celiac disease my entire life, but after the birth of my first child was when my symptoms all of the sudden snowballed. Many were like yours. I later found out that it is fairly common for pregnancy and childbirth to trigger and/or aggravate autoimmune diseases (like celiac disease). I too had the feeling, deep in my gut (ironic, no?) that something was just not right. You can trust your body and yourself. Don't ignore your intuition. I know someone who volunteers at MD Anderson cancer hospital and says that she hears multiple times a day versions of a statement like this: "The doctors told me my tests were normal but I just couldn't shake the feeling that something was wrong." Learning about celiac disease and gluten intolerance has saved me (and my toddler!). I hope you find answers and some peace.

Chakra2

[Marz]

So what on earth do i do? I have seen numerous doctors and just feel like i make myself look like a hypochondriac going from doc to doc.

You don't need a doctor's approval to go gluten free. My blood tests and biopsy was negative, spent a fortune on doctors, couldn't explain any of my stomach issues, panic attacks, night chills/fevers. Went gluten-free anyway (Against doctor and GI's advise to "try introducing wheat again slowly, you're definately not celiac with those results!").

I feel better not eating gluten, full stop. Science can't explain it completely right now, I've accepted that. There's no "definate" test to prove I have celiac disease. I definately feel you are in the same boat. Your symptoms sound like gluten ataxia 110%. I'd recommend trying a strict diet for a few weeks, maybe keep a journal of what you're eating and how you're feeling. If you notice improvements, you have your answer

Keep reading the forums - some gluten-intolerant people are just as sensitive (and in the same way) to soy. But start with gluten and see how it goes!

[Marz]

I am a 23 year old mother of two. Always generally in good health. Until following the birth of my 2nd son this past July. I was fine after the birth but around 6 months later developed a weird numbness in some of my fingers.

I wish I got a penny everytime I read someone started having issues after pregnancy Pregnancy is often a trigger for starting to get symptoms. Mine was a viral infection/food poisoning. Even stress can be a trigger. It's always 'Hey I'm a healthy person, can eat whatever I like' to being as sick as a dog and no doctors can explain it.

I hope you give the diet a try