New Here...is Gluten My Problem?

[Jake'sMom87]

Hi all! I'm new here and just looking for advice/opinions on my situation. I have been suffering many odds symptoms since I had my son 2.5 years ago. Since I was young I've suffered from anxiety, depression, fatigue, and gerd. After I had my son everything went downhill. I am constantly so tired and have zero energy to do anything at all. I also have:

Headaches

Muscle pain/weakness

Anemia

Low D & B6, but normal B12

stomach aches especially after eating

everyday heartburn

excess mucus in my throat (worse after eating)

petechaie

dry skin and scalp

blurry vision/seeing spots

diarrhea at least 3 times a week

brain fog/fuzziness

occasional feelings of loss of balance

anxiety, starting to feel depressed

peripheral neuropathy

feeling of fullness after eating small amounts

hot flashes/feeling like I will faint

aches and pains all over

tingling face/mouth/fingers

I'm sure I'm missing something, but in the beginning I just had a few of these issues and now I have all of them. I have been to many doctors and specialists and nobody has told me anything other than anxiety and tried to put me on meds (tried them and felt worse). I'm at the point where I struggle to do daily activities. I think it's unlikely that gluten is causing my problems, however I'm looking for insight since they can't find anything else. I just really want my life back and I hate being this way since I don't get to spend good time with my son like he deserves.

Should I consider the testing? I really don't want to waste any more money on doctors.

I appreciate you taking the time to read this - I just don't know where else to go...

Thank you!

Robin

[nvsmom]

Welcome Robin. 

 

You have a lot of issues going on. I think celiac disease could be a possiblity but so could a few other problems that have common symptoms.  I can give you my interpretation based on my own experiences and what I have learned (besides the fact that doctors help very little with chronic ill health ).

 

This is what I think:

• Headaches - could be celiac disease, hypothyroidism or other issues. My migraines were caused by celiac disease and aspartame
• Muscle pain/weakness - celiac disease or hypothyroidism, often takes a long time to resolve
• Anemia - common in celiac disease due to low iron, ferritin and B12; could be thrombocytopenia (low clotting) which causes easy bruising, heavy meanstration, and petichiae
• Low D & B6, but normal B12 - common in celiac disease; I even had high B12 so I know not everyone is low in B12
• stomach aches especially after eating - oh yeah, celiac disease. Hypothyroidism slows the metabolism right down and causes problems too
• everyday heartburn- reflux/ GERD is common in celiac disease
• excess mucus in my throat (worse after eating) - don't know about this one...
• petechaie - can occur in celiac disease if have low potassium (K); also found in those with thrombocytopenia (ITP)
• dry skin and scalp - very common in hypothyroidism, also includes hair thinning
• blurry vision/seeing spots - can occur in celiac disease (ivitis or uvitis?) but it can be vision threatening and should be checked out - my SIL has this so I know it shouldn't be treated lightly
• diarrhea at least 3 times a week - common in celiac disease
• brain fog/fuzziness - common in almost every autoimmune disease including celiac disease and thyroiditis
• occasional feelings of loss of balance - gluten ataxia happens in celiac disease
• anxiety, starting to feel depressed - common in both hypothyroidism and celiac disease
• peripheral neuropathy -  yep. celiac disease and hypo
• feeling of fullness after eating small amounts - yep for both again
• hot flashes/feeling like I will faint - common when thyroid is switching between hyper and hypo; celiac disease also often involves low blood pressure which can cause that
• aches and pains all over - yep for celiac disease and thyroiditis
• tingling face/mouth/fingers - some get in celiac disease

 

I think you should get a full celiac panel:

• tTG IgA and IgG
• DGP IgA and IgG
• EMA IgA
• total serum IgA (a control test)
• AGA IgA and IgG

The first three tests look for indicators of damage to the small intestine and the last test looks at gliadin sensitivity. You must be eating gluten in the weeks prior to testing in order to have accurate results.

 

I think you should have your thyroid checked. TSH should be near a 1, free T4 and free T3 should be 50-75% of the normal reference range, TOP Ab should be low, and skip testing total T4 and T3 as those are pretty useless tests.

 

I think you should have your RBC's and platelets checked to see if either is low.

 

Perhaps check your potassium levels. Other nutrients that are often low in celiac disease are iron, ferritin, B's, D's, calcium, and zinc.

 

If you have positive celiac tests, or a positive response to the gluten-free diet (after testing), then you should get your son checked too. celiac disease is genetic and does not always present with symptoms.

 

Good luck. Feel free to ask more questions and look around. There are some really knowledgeable people around here. 

[GottaSki]

Welcome Robin!

 

Nicole has provided excellent advice.

 

I want to stress...do have the tests done before removing gluten.  It can take quite a while to heal from undiagnosed Celiac Disease and it is not easy to remove ALL gluten from one's life.  If you skip the tests you may be left with more questions and uncertainty which can cause more problems down the road.

 

If you read through some of the active threads...you will find several folks that were told to "try" removing gluten before tests were run that are currently experiencing the frustration that comes from skipping testing.

 

Hang in there - read all you can

 

Edited to add...if you aren't sure how to find current threads...click the "View New Content" button in the option line directly under the header/top of the page.

[Jake'sMom87]

Thank you both for your answers! I will get the testing done! I have thought that I have hypothyroid, and my doc actually had tested my TSH 3 times in the past 2 years and it went from 2.6 the first time and the last test which was a few months ago it was 4.96. The last time it was tested they also tested free T4 which I don't remember what is was but I will check. They called me to say the test results were normal. The high range for TSH that they use is a 5. So even though I fell within normal range it obvious that my TSH is rising. I had to push for them to test the T4 & T3 and even at that they only tested the T4. Is there some kind of doctor you would recommend I see? I have tried 4 GPs and none of them take me seriously. I'm getting worse and I can't go on like this anymore.

As far as my son he doesn't seem to have many issues that I can think celiac would be a problem. The only thing is that he had terrible eczema when he was born that didn't clear up until he was 6 months. He has lots of gas though and his stools are frequently runny and a yellowish/green color. He still has some spots of dry skin on his torso and his upper arms for which I have tried every cream, even a prescription from his doctor. Lately he has been complaining of belly aches too which makes me wonder if that is a new thing or if he complains now that he can actually talk to me. Wow...I guess he does have some signs of it. But he also had reflux when he was a baby.

I haven't even tried going gluten free because it seems like so much work for something that I probably don't have. But I will definitely look into getting the testing done, I just need to know who I should see. My doctor will probably look at me like I'm crazy.

Thanks again!

[whitepine]

Hi there,

 

It may seem like it's a lot of work in the beginning but most people notice after a week or two that their symptoms improve. Sometimes it can even be within days, some symptoms will improve. I noticed after a week when I first started the diet that my stool was better, I didn't have a lot of abdominal pain and I was less nauseated.

Defiantly get the test done before you start the diet especially if you are being tested through blood. I've read that people have gone on the diet then have had to go back to gluten which made them really sick again to result in a negative blood test. You can still be sensitive to gluten and not have celiac, sensitivity can range from mild to severe. Sometimes people are just allergic to certain grains like wheat. It's really all about removing things one after another. I removed wheat from my diet first with no change in symptoms to completely removing gluten from my diet and then corn


 

[w8in4dave]

Wow!! you have so many symptoms I have had , amazing!! I would stay on the Gluten and get the test!! Good luck!! 

[sliebman]

Definitely get the test, I got tested, but my doc only did the 1st 2 tests, which both came back negative.  I have already started the gluten free diet, and am feeling absolutely wonderful (I guess what most people would think of as normal), but I wish I had been on here first, and known to ask my doc for the full panel, now I don't know if its actually celiac, or just a sensitivity.  I know for sure it is a problem with gluten, as I just got gluttened a few days ago, (without knowing it) and knew right away the next morning exactly what it was.  Sure enough, I found out the marinade for some fish I had had, had soy sauce in it. 

And I do not want to do a gluten challenge to get an official diagnosis, at least not yet, I feel to good to go back now:(

[Jake'sMom87]

Okay so I was able to access my most recent thyroid results.  My TSH was 4.96 and my free T4 was 1.26 with a referrence range of 0.8-1.8.  That is all that was checked.  I really think I may have a thyroid problem, but my biggest concern recently is that I feel like I'm going to pass out.  It can happen when I'm rest but is more likely to happen when I'm up and moving. 

 

I have a friend who is a nurse and her doctor does celiac testing so I am trying to get an appointment with them in the near future. 

 

Thank you all for your replies, it's nice to be able to talk to people who take you seriously.

 

Thanks again,

 

Robin

[0range]

Okay so I was able to access my most recent thyroid results.  My TSH was 4.96 and my free T4 was 1.26 with a referrence range of 0.8-1.8.  That is all that was checked.  I really think I may have a thyroid problem, but my biggest concern recently is that I feel like I'm going to pass out.  It can happen when I'm rest but is more likely to happen when I'm up and moving. 

 

I have a friend who is a nurse and her doctor does celiac testing so I am trying to get an appointment with them in the near future. 

 

Thank you all for your replies, it's nice to be able to talk to people who take you seriously.

 

Thanks again,

 

Robin

 

Get your thyroid antibodies checked. Although old lab ranges say a TSH of upto 5 is fine, newer ranges say anything above a 3 is getting iffy. Did they not check Free T3? That's the more potent thyroid hormone. I have a friend who has elevated thyroid antibodies, high FT4 (i.e. mid to upper end of the range) but very low FT3. She has classic hypo symptoms even though everything "looks normal". Why do you feel like you're going to pass out? Do you get any alarming symptoms that incite this feeling? 

 

p.s. I have a lot of your symptoms! have not a nutritional deficiency test done (I'm only 23, so doctors don't routinely check) but my ferritin is always measly low. Was 9 a few months ago but have been taking copious amounts of supplements. It is currently 13 out of a 10 - 291 range. I will be getting a celiac blood panel done this month, but honestly, it is so hard to tell what is thyroid-related and what is due to another autoimmune problem such as celiac, as nvsmom pointed out. If I could wager a guess I would say that you do have an autoimmune problem going on and would encourage testing for thyroid antibodies as well as the whole celiac panel.

[Jake'sMom87]

Thanks for the advice I will see if I can get those checked, but do I just ask my regular doctor or is there someone else I should see?

When I get the pass out feeling it starts by getting sweaty and then I just feel weak all over and it is sometimes accompanied by the feeling like I have to go to the bathroom. A lot like a panic attack although it's not because I have had those and it's not the same. So then I just feel like my whole body is jello and I turn pale. Even my boyfriend asks me are you okay. It tends to happen to me when I'm in a public place usually so maybe it is anxiety or something but it doesn't feel like it.

Besides that I get daily headaches which happen off and on throughout the day so I'm going to start timing them and see if there is a correlation between them and when I eat something.

Thanks for your response. When are you getting tested?

[nvsmom]

Okay so I was able to access my most recent thyroid results.  My TSH was 4.96 and my free T4 was 1.26 with a referrence range of 0.8-1.8.  That is all that was checked.  I really think I may have a thyroid problem, but my biggest concern recently is that I feel like I'm going to pass out.  It can happen when I'm rest but is more likely to happen when I'm up and moving. 

 

I have a friend who is a nurse and her doctor does celiac testing so I am trying to get an appointment with them in the near future. 

 

Thank you all for your replies, it's nice to be able to talk to people who take you seriously.

 

Thanks again,

 

Robin

 

Oh yeah, you are  looking hypo with those numbers. TSH is high (doctyors might argue with me on that) and your Free T4 is in the bottom half of the range.  When my numbers were like that I felt quite hypo, and my free T3 was  quite low. I agree with Orange that you should ask for TPO Ab and free T3. Free T3 should be in the upper half of the normal range.  If TPO Ab is low, don't discount it; my TPO Ab has never been abnormal but I am still on a full replacement dose of natural dessiccated thyroid.

 

Your panic attack feeling is a hyper symptom (I believe) so your thyroid could be causing you to swing both ways - it's not uncommon. Definitely mention your symptoms to the doctor.

 

Good luck with your testing.

[0range]

Thanks for the advice I will see if I can get those checked, but do I just ask my regular doctor or is there someone else I should see?

When I get the pass out feeling it starts by getting sweaty and then I just feel weak all over and it is sometimes accompanied by the feeling like I have to go to the bathroom. A lot like a panic attack although it's not because I have had those and it's not the same. So then I just feel like my whole body is jello and I turn pale. Even my boyfriend asks me are you okay. It tends to happen to me when I'm in a public place usually so maybe it is anxiety or something but it doesn't feel like it.

Besides that I get daily headaches which happen off and on throughout the day so I'm going to start timing them and see if there is a correlation between them and when I eat something.

Thanks for your response. When are you getting tested?

 

If your regular doctor is not compliant with testing, ask to see an endocrinologist (who typically is more well-versed in thyroid disorders).

 

I feel for you I have had low-grade anxiety all my life (phobia's mostly, and a nervous stomach) but thyroid-induced anxiety is a whole new ball game. The first time I had a panic attack due to my medication dose being too high (i.e. medication-induced hyperthyroidism) I rushed to the hospital because I thought my body was shutting down. I had no idea that anxiety could be so debilitating, and so scary, if that is in fact what it was. I know anxiety in and out, but this was nowhere near to what my body has ever been prepared for. Anxiety could be one reason to explain your symptoms but I truly feel it is a reaction to something that is going wrong in your body. Do you feel brain fog and have blurry vision mainly at night? This used to be one of my symptoms when I was severely overmedicated on thyroid medication. I still have intense brain fog, but it happens to 'hit' in the evening. 

 

I'll be testing for celiac, along with my dad (who has Hashimoto's and accompanying gut problems), at some point next week. Keep us posted and I hope you get some answers soon! 

[Juliebove]

I had a lot of those symptoms.  Mine began after having the baby.  A year after I had her, I learned that I had type 2 diabetes and nerve damage because of it to my feet, legs and stomach.  The stomach part (gastroparesis) also caused the GERD.  I had developed a thyroid problem while pregnant and I was being massively overdosed on my thryoid med by what I think was a bad Dr.  When it was brought to his attention he said that he wanted to keep me that way as I was overweight.  Well, it doesn't work that way.  If your regular Dr. can't sort this out, you might try an Endocrinologist.

[Jake'sMom87]

Thanks again for your replies.  I do feel like I have hypothyroid.  I have the majority of those symptoms but I thought my Free T 4 was okay.  I go back to GP on Monday because he had sent me to a dermatologist for my petechaie and she didn't know what was causing it.  I asked her about vitamin deficiencies causing that since I do have deficiencies and she said if it was from that they would be on my legs, not my arms and chest.  So called my GP and told him I need further testing.  It's quite scary to just let these things go.  I will ask him about further testing for my thyroid and if he doesn't want to I will look into seeing an endo. 

 

Orange - I totally know what you mean about the anxiety thing.  I have suffered anxiety all my life and panic attacks however this was way different.  I actually thought I might drop dead.  I have blurry vision in my left eye most of the time and that eye sort of "pops out" more than the other one.  Sometimes it causes pain behind it which I think is inflamation.  Brain fog I get off and on throughout the day. And I have terrible night vision which causes me to stumble around.  I'm only 26 and I feel like I'm 80.  I can't keep up with my friends much less my son.  Thankfully I have a desk job so I can still work, but if it was anything physical I would have given up by now.

 

Juliebove - Do you have celiac?  My symptoms started after I had my son at age 2.5 years ago.  I also have some sort of neuropathy in my feet, hands, and lower legs.  I have GERD which I've had since I was a teen.  I really try to take it easy since I never know when I will get one of these attacks. 

 

Robin

[0range]

Thanks again for your replies.  I do feel like I have hypothyroid.  I have the majority of those symptoms but I thought my Free T 4 was okay.  I go back to GP on Monday because he had sent me to a dermatologist for my petechaie and she didn't know what was causing it.  I asked her about vitamin deficiencies causing that since I do have deficiencies and she said if it was from that they would be on my legs, not my arms and chest.  So called my GP and told him I need further testing.  It's quite scary to just let these things go.  I will ask him about further testing for my thyroid and if he doesn't want to I will look into seeing an endo. 

 

Orange - I totally know what you mean about the anxiety thing.  I have suffered anxiety all my life and panic attacks however this was way different.  I actually thought I might drop dead.  I have blurry vision in my left eye most of the time and that eye sort of "pops out" more than the other one.  Sometimes it causes pain behind it which I think is inflamation.  Brain fog I get off and on throughout the day. And I have terrible night vision which causes me to stumble around.  I'm only 26 and I feel like I'm 80.  I can't keep up with my friends much less my son.  Thankfully I have a desk job so I can still work, but if it was anything physical I would have given up by now.

 

Juliebove - Do you have celiac?  My symptoms started after I had my son at age 2.5 years ago.  I also have some sort of neuropathy in my feet, hands, and lower legs.  I have GERD which I've had since I was a teen.  I really try to take it easy since I never know when I will get one of these attacks. 

 

Robin

 

I'm really sorry to hear that autoimmune thyroid problems can be a pain to diagnose. Do you know if thyroid disease runs in your family? Your symptoms sound like hyperthyroidism to me (Graves disease) - the anxiety, eye inflammation/'popping out', etc.

[Jake'sMom87]

I'm really sorry to hear that autoimmune thyroid problems can be a pain to diagnose. Do you know if thyroid disease runs in your family? Your symptoms sound like hyperthyroidism to me (Graves disease) - the anxiety, eye inflammation/'popping out', etc.

I have symptoms of both hypo and hyper. My mother has hypo but not very bad. She only went to the doctor for fatigue and weight gain and that's when they found it. She took herself off her medication because it was giving her heart palpitations.

My folate is low and my ferritin level is 12 so I think that's low also even though it does fall within my doctor's normal range. I have trouble getting the docs to take me seriously and test me for things also because of my age (26). I actually had one doctor tell me that I'm young and I should just be happy that I have a long life ahead of me! Unbelievable.

I see my GP tomorrow for a follow up so I will ask about the thyroid tests as well as possibly doing the celiac tests. I've been struggling with this for 2 years and it's hard to stay hopeful that I will ever get better.

Will keep you posted!

Robin

[cyclinglady]

Your ferritin is too low.  Another sign of celiac disease.  

 

I have been swinging back and forth (hypo and hyper) for the past two years after being hypo for over 15 years.  The hyper times were the worst!  Super anxiety that was completely uncharacteristic.  I was diagnosed with celiac disease in March.  Since then, my doc and I have working on the thyroid issue.  I cut back on meds, and became very hypo and then slowly (six months), we began increase my thyroid meds (I do not want to experience being hyper again!).  When I reached 4.26 on my TSH result, my doc (new) was satisfied (was in the "range"), but I was still hypo.  Now, I'm a .8 and I feel great (don't want to go any lower).  Anything for me between a 1 and under a 3 is ideal.  I can really tell the difference.  

 

I'll probably have to back down on my meds, (hopefully) as I my intestines improve on a gluten free diet. 

 

Your Mom needs to go back to the doctor for a thyroid panel too.  She probably was getting too much thyroid medication (thus, the heart palpitations).   All thyroid patients should be tested once a year (if stable) and every six weeks (when adjusting meds) until stability and desired results are reached.  

 

Keep eating gluten until you get tested.  And push for both celiac and thyroid tests!  Everyone here has given you excellent advice.

[0range]

 

• blurry vision/seeing spots - can occur in celiac disease (ivitis or uvitis?) but it can be vision threatening and should be checked out - my SIL has this so I know it shouldn't be treated lightly
• diarrhea at least 3 times a week - common in celiac disease
• brain fog/fuzziness - common in almost every autoimmune disease including celiac disease and thyroiditis
• occasional feelings of loss of balance - gluten ataxia happens in celiac disease

 

Wanted to mention that these symptoms can be seen with thyroid problems as well (I'm currently seeking a celiac dx as well, and honestly am not sure which is which!). If you have hyperthyroidism, you can have eyesight problems such as blurry vision. Diarrhea and weight loss can happen too. I personally have been diagnosed with benign paroxysmal positional vertigo (the IBS of the vertigo world... which is another way of saying "you have vertigo but we don't know why!").

[Jake'sMom87]

Wow...thank you so much for all the info. I need to write this stuff down because when I get to the doctor I like totally forget all my reasons for being there. It provokes so much anxiety in my. I keep telling me my mom to go back to the doctor but she said she's fine. Talking to you all has made me feel so much more calm about this whole situation. Answers will come eventually.

I have a question though about stomach bloating/cramping in celiac...I have had what I would consider minimal cramping ever since I can remember and bloated oh yes when I was younger. Now I'm overweight so if I'm bloated I really don't notice it. Honestly I thought it was normal because it's never caused me more than minimal pain. So I asked my boyfriend about it just to get another idea of what someone else feels after they eat. He had no idea and he said he never gets cramps or anything. I have almost constant sensation that I have to go #2 even if it's hours before I actually feel the urgency to go. So now it makes me wonder if this is a symptom. I should also mention that my stomach makes noises all the time. Again pretty painless but quite embarrassing if I am in a meeting or something. Any thoughts.

Orange - I'm curious to hear the results of your celiac tests.

Robin

[0range]

Wow...thank you so much for all the info. I need to write this stuff down because when I get to the doctor I like totally forget all my reasons for being there. It provokes so much anxiety in my. I keep telling me my mom to go back to the doctor but she said she's fine. Talking to you all has made me feel so much more calm about this whole situation. Answers will come eventually.

I have a question though about stomach bloating/cramping in celiac...I have had what I would consider minimal cramping ever since I can remember and bloated oh yes when I was younger. Now I'm overweight so if I'm bloated I really don't notice it. Honestly I thought it was normal because it's never caused me more than minimal pain. So I asked my boyfriend about it just to get another idea of what someone else feels after they eat. He had no idea and he said he never gets cramps or anything. I have almost constant sensation that I have to go #2 even if it's hours before I actually feel the urgency to go. So now it makes me wonder if this is a symptom. I should also mention that my stomach makes noises all the time. Again pretty painless but quite embarrassing if I am in a meeting or something. Any thoughts.

Orange - I'm curious to hear the results of your celiac tests.

Robin

 

No problem! I find the majority of symptoms really overlap with thyroid and celiac. Both are autoimmune issues and can affect the gastrointestinal tract -and- other areas (constipation if hypo, diarrhea if hyper). I was feeling very good last year after starting thyroid meds, but earlier this year I started having insane bloating out of nowhere. Other symptoms that do not make any sense have popped up as well (like the neurological problems) despite my thyroid numbers being within range. My stools look very odd too (pale coloured with 'corn' pieces TMI even though I don't eat any corn? haha). I just did the blood test for celiac on Saturday, and am awaiting the results! Will post here regarding what we find. I'm actually getting a colonoscopy done as well next Saturday, to rule out IBD since I have some overlapping symptoms after contracting measles 2 years ago. Are you due for a celiac blood test soon? 

[Lock]

 

I have blurry vision in my left eye most of the time and that eye sort of "pops out" more than the other one.  Sometimes it causes pain behind it which I think is inflamation. 

 

Robin

 

I think you should definitely be assertive about being referred to specialists. The eye popping out and inflamed behind it is the thyroid being hyper. It can swing hyper and hypo in the process of failing. The blood levels on any one day are meaningless and can have nothing to do with how you are feeling. My mom's thyroid was "in normal range" for two years while they worked her up for Alzheimer's before her thyroid finally quit completely, and she got treated with Synthroid. When her blood levels were stable right in the middle of the range suddenly she was 100% better and she no longer has the terrible symptoms we thought were Alzheimer's. You being 26 is a big challenge, I've been there. Don't let the primary doctor blow you off. In my opinion you need to see an endocrinologist for a complete thyroid evaluation and also a gastroenterologist for a complete investigation including celiac.

[cyclinglady]

Thanks again for your replies.  I do feel like I have hypothyroid.  I have the majority of those symptoms but I thought my Free T 4 was okay.  I go back to GP on Monday because he had sent me to a dermatologist for my petechaie and she didn't know what was causing it.  I asked her about vitamin deficiencies causing that since I do have deficiencies and she said if it was from that they would be on my legs, not my arms and chest.  So called my GP and told him I need further testing.  It's quite scary to just let these things go.  I will ask him about further testing for my thyroid and if he doesn't want to I will look into seeing an endo. 

 

Orange - I totally know what you mean about the anxiety thing.  I have suffered anxiety all my life and panic attacks however this was way different.  I actually thought I might drop dead.  I have blurry vision in my left eye most of the time and that eye sort of "pops out" more than the other one.  Sometimes it causes pain behind it which I think is inflamation.  Brain fog I get off and on throughout the day. And I have terrible night vision which causes me to stumble around.  I'm only 26 and I feel like I'm 80.  I can't keep up with my friends much less my son.  Thankfully I have a desk job so I can still work, but if it was anything physical I would have given up by now.

 

Juliebove - Do you have celiac?  My symptoms started after I had my son at age 2.5 years ago.  I also have some sort of neuropathy in my feet, hands, and lower legs.  I have GERD which I've had since I was a teen.  I really try to take it easy since I never know when I will get one of these attacks. 

 

Robin

Eye popping -- that sounds a lot like Grave's Disease (hyper thyroid).  This is nothing to mess with.  My mom has Grave's.  She went too long before treatment and has permanent eye damage.  (Imagine driving and always see two speedometers on the the dashboard).  The funky glasses she was prescribed did not help.  She had to quit working and must close one eye to see only one image.  

 

During my bouts of being hyper thyroid, I had eye pain (from the muscles around my eyes, but they didn't start popping).  Plus, I had muscle weakness in other areas of my body.  

 

Get checked out by an ophthalmologist as well.

[Sable's Mom]

Hi, I'm new also.  About a year ago, my dr after listening to my abdomen & asking if I had alot of belly pain, just briefly mentioned that I might want to try to go "gluten-free".  I looked & labels for a couple days, & there was so much else going on in my life, (being laid off from a job, husband's hours getting cut @ his job, holidays approaching) I sorta dismissed the whole "gluten free" thing.   About a month ago, I started experiencing some pretty severe abdominal pain, along with gas, bloating & crazy diarrhea.  I tried to watch what I was eating to see if I could discern a pattern, to no avail.  I am diabetic so did intense research on the medication that I take & thought it might be that.

Having no health insurance at the present, I called my dr's office & talked to the nurse.  She quickly dismissed my idea of my diabetic medicine doing this to me since I have been on it for quite a long time.  She said she had 2 or 3 family members who had recently gone "gluten-free" and were feeling SO SO MUCH BETTER.  so, I have "tried" to do that for about a week now.  Last weekend, we had a friend over for dinner & I grilled hamburgers.  I just totally forgot & put my hamburger on a bun & ate it. YIKES!!!  Oh the pain....So, I have become 'crazy out of my mind' trying to research this whole thing.  My niece has the same issue.  She was tested & she tested negative.  She lives in New York & I live in Indiana, so my mission this evening is to contact her & talk to her about it.  My husband wanted pizza this past Friday evening, I new better than to try that, so I ordered bbq wings, but that probably wasn't too smart an idea either, not knowing what ingredients were in the sauce,  SO, once again, the weekend was spent in pain!

I have a couple questions, if anybody would be so kind as to share their thoughts?

1) Once I accidently eat something that is gluten laden... how long does it take normally for the pain/symptoms to dissipate?

2) My stomach was a bit upset the other evening, so I made a banana smoothie (banana, ice, milk, sweetener) it seemed to calm my stomach down a bit.  Is there anything that has been shown to alleviate the symptoms?

 

thanks for any & all suggestions/advice.   I am glad to have found this forum!!!

[Jake'sMom87]

Just saw my GP today. He didn't seem concerned with my eye, although most times it looks normal. When it looks larger is when I have pain with it which I wasn't having at the moment. He is testing me for vasculitis and inflammatory issues since I have petechiae. It's not what I wanted, but I'm happy if he wants to test away and let's get to the bottom of this. I mentioned my thyroid levels and he said all your tests so far have been perfect. He said, "you're the healthy patient I have". Okay that doesn't change how I feel inside. If these tests come back normal I'm going to see an endocrinologist. If it is my thyroid I think I am swinging back on forth. Because I also have extreme fatigue and weakness. I will let you guys know what I find out. I'm really appreciate all the support I'm being shown here especially considering I don't have celiac (at least not that I know of).

Robin

[Abthiede]

This was totally me last year around this time. I thought I was going crazy!! I'm still without a diagnosis, but recently began the journey of diagnosing celiac. Good luck to you! You're not alone!!