Does This Sound Like A Gluten Intolerance?

[kimbokimbo]

I have not felt well for almost 4 years.  Well, I've had issues most of my life with this thing or that, but the REAL trouble started about 4 years ago - a few months after the birth of my 3rd, and last, child.  I am now 40 years old.  I started getting crazy genital itching (sorry if TMI!), which came and went for a long time.  I'd have to use creams that my dr gave me quite often to get rid of it.  It was not an infection, yeast or otherwise.  I then started getting dizzy spells, numbness and tingling in my extremities, shortness of breath, migraines, and I started having frequent loose bowel movements.  My heart was racing all the time and I was SO TIRED yet when I'd lie down to sleep by body wouldn't shut off - it was like I was too 'wired' to sleep even though I was exhausted.  I was over emotional, having a lot of anxiety about regular everyday stuff, and feeling like I was either losing my mind or dying.  I wasn't sure which.  My dr right away told me that it's just anxiety but I felt that the physical symptoms started first and I wasn't anxious all the time.  I didn't buy it so turned down her offer of antidepressants.  Since then I've seen dr after dr after dr - at least 10 by now.  This includes several specialists and several trips to emergency.  I've seen a gynecologist, chiropractor, allergist, pelvic physiotherapist, 2 naturopaths, colo-rectal surgeon, dentist and general surgeon.  I've had more tests than I can even remember right now.  Almost everything has come back negative.  GREAT!  But beyond frustrating.  What I've discovered that I have is a vitamin D deficiency (for which I'm on a daily dose for life as I can't seem to keep my level within normal range), acid reflux and hiatal hernia, hemorrhoids, a low-normal iron level for which I'm taking a supplement, migraines, minor arthritis, abnormal menstrual bleeding, and I had a root canal done after no dental issues whatsoever for over 30 years.  The combination of these issues seems very strange to me, like there must be some all-over thing going on.  This prompted me to see a nutritionist who does food-intolerance testing.  She uses a BioMeridien electrodermal system, which I didn't know before I booked with her.  I found it very interesting, I'm just VERY unsure whether to believe what her little machine is telling me.  It says I'm intolerant to both wheat and food colourings.  I gave up both 100% (including all hidden sources) for about 8 or 9 months and felt a TON better.  I also lost 30 lbs as a bonus.  I was thrilled!!  But I was still not feeling completely fine and started having long bouts of diarrhea once in a while (2-3 weeks long).  It was at this point that I had a colonoscopy (there are a lot of bowel issues in my family so it was a 'just in case' thing due to the diarrhea) - it came back fine except that I have hemorrhoids.  The dr's suggestion was to be tested for Celiac, which I did, both bloodwork and biopsy, and both came back negative.  And yes, it included the tests for gluten antibodies.  Should I believe this 'wheat intolerance' thing and just pursue that for longer to see if I improve again?  Could her funky machine be right?  Could the diarrhea have been from something else?  I am so confused.  The diarrhea is behind me now - this was a couple of years ago - I am now dealing with constipation instead, as well as most of the other symptoms on and off, and gained back the 30 lbs when I started eating wheat again before my Celiac testing.  Sigh...  And like other stories I've read on here I'm having a hard time committing to giving up wheat/gluten as a trial without an actual diagnosis or dr telling me to do so.  KWIM??  Any advice??  OMG this is long!!  If you've made it this far through my story I thank you very much for taking the time!    Oh, other issues I've had in my life are SEVERE all-over cystic acne as a teen (I eventually took Accutane to get rid of it as no other treatments were working - bad call, I know), bad oozing eczema on my wrist and elbow in my 20s, pale skin and canker sores my whole life.  I sound like a real treat, don't I??!!  LOL

[NoGlutenCooties]

Kimbo - Welcome to the forum!  I'm no doctor, but your symptoms sure sound like Celiac to me.  Of course, all of your symptoms could also have other causes, so it's good that you've gotten yourself checked out.  How long were you back on the gluten before you had your test for Celiac?  Also, Non-Celiac Gluten Intolerance (NCGI) gives all the same symptoms as Celiac, but without the villi damage - so the tests for Celiac come back negative, but eliminating gluten makes your symptoms go away - which is the true test.  Many Celiac and NCGI people also have various other food allergies/intolerances, so it's important to get that nailed down if you have eliminated gluten and are still having symptoms.

 

I'm not familiar with the BioMeridien electrodermal system, so I can't comment on that.

[kimbokimbo]

Kimbo - Welcome to the forum!  I'm no doctor, but your symptoms sure sound like Celiac to me.  Of course, all of your symptoms could also have other causes, so it's good that you've gotten yourself checked out.  How long were you back on the gluten before you had your test for Celiac?  Also, Non-Celiac Gluten Intolerance (NCGI) gives all the same symptoms as Celiac, but without the villi damage - so the tests for Celiac come back negative, but eliminating gluten makes your symptoms go away - which is the true test.  Many Celiac and NCGI people also have various other food allergies/intolerances, so it's important to get that nailed down if you have eliminated gluten and are still having symptoms.

 

I'm not familiar with the BioMeridien electrodermal system, so I can't comment on that.

Thanks so much for your reply.  I was eating gluten before my testing according to my dr's directions - at every meal for 6 weeks.  I felt disgusting and haven't been able to shake it since.  I had the blood work done 2 years ago and the biopsy at the beginning of this year but continued to eat gluten in between.  I have also had a lot of upper right-side abdominal pain through all of this so I suspected gallbladder trouble but all testing for that is negative as well (bloodwork, ultrasounds, and HIDA scan) yet the pain continues.  Perhaps I'll just have to give this gluten-free thing an honest try to know for sure

[KCG91]

I'm very new to all this but two things stood out to me - the non-infection genital itching and the irregular periods. Look up lichen sclerosis - here and online - for the itching and see if it sounds like you. My periods had a very long cycle and were light and short but incredibly painful before I got diagnosed, started taking iron supplements and went gluten-free - hopefully that might help if that's something like what you meant! Best of luck. 

[kimbokimbo]

I'm very new to all this but two things stood out to me - the non-infection genital itching and the irregular periods. Look up lichen sclerosis - here and online - for the itching and see if it sounds like you. My periods had a very long cycle and were light and short but incredibly painful before I got diagnosed, started taking iron supplements and went gluten-free - hopefully that might help if that's something like what you meant! Best of luck. 

I'm sorry you've had such troubles with your cycle!  Mine are totally different actually - regular (26-28 days) but with 5-10 days of 'spotting' beforehand.  Actually it started out as light spotting years ago but has now become full-blown bleeding, just lighter than a regular period.  My periods have become more painful and clotty and heavy over the last couple of years though.  They're not fun at all - I feel like I might die every month.  The itching I had researched at the time and lichen sclerosis did come up but my dr said no and really not all of the symptoms fit.  I dunno.  I never figured it out but it's gone now - it lasted quite a long horrible while though and I hope it never comes back.  Thanks for your help!!

[w8in4dave]

I think your bowel problems after being DX'd for Celiac may be an extra intolerance , like corn , or something. Try and keep a food journal. I found I have a corn intolerance. Also some Celiacs are Lactose intolerant. I do think your Celiac or Gluten intolerant , but there is another some something going on. I hope you find out what it is. 

[Unichic]

I'm just going to throw my two cents in here. I'm not a gluten expert, but I know a lot about thyroid disease. I would definitely have a full thyroid panel with antibodies done: 3rd generation tsh, free t3, free t4, tpo antibodies and globulin antibodies. Thyroid disease often rears it's ugly head after childbirth. Remember that a tsh over 3 is indicative of some level of hypothyroidism, regardless of the ridiculous lab ranges, that are often outdated. It is even theorized that a Tsh over 2 should be watched and monitored carefully. Good luck!! Your symptoms sound like mine after I had my son. I went hyper for 3 months and then went hypo and finally got diagnosed with hashimotos.

[kimbokimbo]

I'm just going to throw my two cents in here. I'm not a gluten expert, but I know a lot about thyroid disease. I would definitely have a full thyroid panel with antibodies done: 3rd generation tsh, free t3, free t4, tpo antibodies and globulin antibodies. Thyroid disease often rears it's ugly head after childbirth. Remember that a tsh over 3 is indicative of some level of hypothyroidism, regardless of the ridiculous lab ranges, that are often outdated. It is even theorized that a Tsh over 2 should be watched and monitored carefully. Good luck!! Your symptoms sound like mine after I had my son. I went hyper for 3 months and then went hypo and finally got diagnosed with hashimotos.

Oh how I wish you were right!  Well, sort of   My dr did do a very thorough thyroid blood panel - even got 'in trouble' on the report for ordering so many thyroid tests at once - apparently there's supposed to be a certain process they follow (if one test is off then order the next one, etc) and she too was sure this was the problem so just did it all at once and nope, nothing.  Grrrr.  But I appreciate her trying

 

Have been talking to a cousin of mine whose son has had Celiac since he was very small and she says to just go off gluten and see if it helps.  Apparently her daughter is gluten free now as well - was having trouble breathing so their naturopath told them to take her off gluten and it worked!  They all have negative Celiac bloodwork though other than her son.  Proof that it's not all about the testing, I guess.  I'm on day 3 of no gluten and screwed up at Tim Horton's this morning   Was starving and it was a small one so they only had the usual donuts/muffins/cookies so I had one.  Was mad at myself when my heart started racing and my sinuses filled up!!

[kimbokimbo]

Oh how I wish you were right!  Well, sort of   My dr did do a very thorough thyroid blood panel - even got 'in trouble' on the report for ordering so many thyroid tests at once - apparently there's supposed to be a certain process they follow (if one test is off then order the next one, etc) and she too was sure this was the problem so just did it all at once and nope, nothing.  Grrrr.  But I appreciate her trying

 

Have been talking to a cousin of mine whose son has had Celiac since he was very small and she says to just go off gluten and see if it helps.  Apparently her daughter is gluten free now as well - was having trouble breathing so their naturopath told them to take her off gluten and it worked!  They all have negative Celiac bloodwork though other than her son.  Proof that it's not all about the testing, I guess.  I'm on day 3 of no gluten and screwed up at Tim Horton's this morning   Was starving and it was a small one so they only had the usual donuts/muffins/cookies so I had one.  Was mad at myself when my heart started racing and my sinuses filled up!!

But then I second-guess myself and wonder if maybe it's the coffee making my heart race (totally possible but I drink coffee every day and don't have this reaction every time) or the cream in the coffee (also possible, I used to race to the bathroom after every cup!) or maybe there was too much sugar in the raisins (it was a tea biscuit).  Goodness!!  Somehow I'll figure this out    Thanks to all of you!

[Unichic]

Post your thyroid lab results here! Check your morning temps too. This is often a very good indicator of thyroid function. First few days of your period is the best time to check, but just before you hop out of bed will likely give a good indication too. Non digital is best, but you can use one if you allow the thing to keep going after the beep for another full minute or so. Low body temps (consistently) indicate hypothyroidism. A healthy body will produce consistent morning temps of about 97.6-98.2. (Rising to roughly 98.6 mid day). Mine were in the 96's consistently. I always ran low and never knew why. Temps above that can indicate an over active thyroid (for instance, I know I need to lower my meds when my temps get close to 99 or above, mid day). Anxiety and racing heart is often associated with hyperthyroidism: however, I have tachycardia and it happens when I am too low as well. Thyroid disease is not as easy to diagnose as one might think. Sometimes levels fluctuate into the normal range just when you are getting a test drawn. I suffered for about 15 years, with doctors telling me I was find and family telling me I was a hypochondriac until the birth of my kids when only my thyroid antibodies went way off the charts. Finally I had been diagnosed with autoimmune thyroid disease. The lab ranges have come down since then, so what was normal then, would have been definitively out of range today, but still. It is the most over looked and under diagnosed disease.