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vitiligo-ch-1This is a tough post for me to write.  I had Graves disease when I was pregnant with her.  In early June she went on a field trip to the zoo and came back with a halo nevis mole (mole on her neck that was pure white around the edges), and white spots around her right eye and her entire right eyelid was white. She had a faint white patch on her forehead.  I waited a week and then called the dr. for a referral to a dermatologist. I knew it was vitiligo. We’ve been on Protopic since early July (1 month after the 1st spot appeared).  Since then her face seems stable. I had noticed two faint spots on her chin that don’t seem worse and pinpoint specks on her knee, elbow and 3 toes.  They don’t seem to be growing, but just their appearance makes me worried.

At this stage, it’s not very noticeable. Her bangs cover most of it. However, it’s her future that I’m concerned about. Even though I know she will be supported and loved, standing up to teases will be the more difficult task.  Of course I’m grateful it’s not a disease that affects her physical health, but sometimes the mental health issue is more concerning.

 

My biggest hope is to document her treatment protocol and timeline so other parents will have something to refer to.

  • First spots: around June 2, 2016
  • Protopic started July 2, 2016
  • As of July 24, no improvement…yet.

She’s had bowel issues her whole life (as have I, and her older sister who gets bad eczema on her hands, usually in the winter).  We’re on vitamins right now (kids gummy multivitamin, b12 gummies, lots of sunlight right now, and eating lots of peaches, watermelons and cantaloupe for beta-carotene, and peas and orange for folic acid and vitamin C.

IMG_4220Wish us luck on this journey!

UPDATE Aug 13, 2016

After about 6 weeks of putting on Protopic and about 4 weeks of Ginko Biloba (she’s stopped taking it now), my  daughter is getting some repigmentation in her spots! So exciting.

Update Aug 27, 2016

Depigmentation continues. I would love to know if anyone else has had similar results? I’d of course love to know what her future with the disease looks like. Her digestion issues continue, and I’m worried this will be a trigger for her in the future, although, as she get’s ready to go to Senior kindergarten, I am just relieved her condition is pretty much unnoticeable at this point.

I will post a picture soon to show it’s progress! The spot by her eye is filled in (a little darker), the spot on her cheek is almost gone. Her forehead spot has filled in and her left eye (not pictured), is slowly blending into normal but still the entire eyelid.

 

For over 5 years I’ve struggled with weird health issues, from low b12, fatigue, extreme bloating, weight gain, etc..

Found out it’s not celiac or gallbladder. I think it’s systemic candidiasis.

Recently had thrush in my nipple (twice), a fungal nail infection and fungal rash. This all started after I cut out sugar and most starches from my diet. Any sugar after this point led to a reaction.

I had white stuff coming out of my skin and in my feces.

Chin

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Chin

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Chest Rash – Pityrosporum Folliculitis?

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Feces/Stool with white specks

(There’s hair from the hairbrush in there and  yes, I need to clean my toilet)

IMG_2783

 

Thumbnail after paronychia

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tam nail

I have been suffering weird symptoms for 5+ years. It started after a miscarriage and my graves disease going into remission. After Christmas in 2010 I had sudden and severe back pain that went on to radiate through my whole left side and then became systemic. For years I was red and super bloated and had weird back pain in the gallbladder area.

In the summer of 2014 I went gluten free and and a major improvement in my symptoms, but they didn’t go away.  Recently I had a couple of fungal infections, one itchy rash on my chest and one in my nails.  Also, while the pain was in my gallbladder area, my symptoms would flare after carbs and starches.  I recently went sugar-free, starch free and noticed lots of white specks in my stool which looked like possible spores of some type. They didn’t look like mucous, they were soft and rice-shaped(ish), and didn’t look like bugs. They were totally throughout my stool.  After three weeks I was plateaued and I still couldn’t eat starches without that spot in my back flaring up. I could almost feel it bubbling inside me.

I started CandiGone 2 days ago hoping this was finally the answer to my years of sweaty, bloating, achy hell.

What am I experiencing?

  • neck pain after eating
  • severe dehydration and dry hands & face
  • headaches
  • irritability
  • muscle spasms (probably from dehydration)

I had severe gas pains between my hips for 2 days when I went sugar/starch free and it was so intense I had bruising all down my thigh because it pinched the nerve/vein in my hip. It was so weird, but this is what happened 5+ years ago when my symptoms started and had a numb spot in my thigh.

I have a severe headache right now, but my baby is sleeping so I wanted to write a post for the first time in a long time to mention how this diet seems to help soooo much. I am just praying that I can enjoy carbs and sugar in the future. In the mean time, I’ve dropped a few needed pounds, especially since I’m post-partum still. I’m into my old fat clothes. I would love to drop a pant size still – 15 lbs would be super. Let’s hope this helps!

Three and a half years ago my symptoms started with an intense tightness in my back, along with weird swelling  and sweating symptoms, inflammation (ESR, CRP), and vitamin deficiencies, severe b12 and ferrtin anemia, and low albumin. I have since been able to tie the symptoms to eating, but could never narrow it down as to what food bothered me.

After 1.5 months of elimination diet, it seems that any carb causes instant bloating in my stomach and fingers, up to my upper arms and the right side of my face.  I have anti-TPO antibodies and have issues with my thyroid. My TSH is normal (1.o) but the free T4 was at the very bottom of the normal scale 9.7 pmol/L or 0.77 ng/L.

I’d like to think that all my issues are thyroid related. I know that wikipedia says:”The thyroid hormones are essential to proper development and differentiation of all cells of the human body. These hormones also regulate protein, fat, and carbohydrate metabolism, affecting how human cells use energetic compounds. They also stimulate vitamin metabolism. ”

The question is, is it central hypothyroidism, meaning my pituitary, given that my TSH is normal? My doctor tells me I’m stressed or have fibromyalgia. I’m at the point where I’ve almost stopped eating, but am not losing much weight. The carb reduction has definitely made me less swollen and my pants are baggy. My face is red all the time and I’m used to being ghost white.  My hair is disgustingly dry and frizzled and turning grey super fast (embarrassing, I’m mid 30s).

Just looking to see if anyone else has had similar problems…any hypothyroid people with this issue?

 

Was diagnosed with hyperthyroidism in Sept 2009.  Allergy symptoms started January 2010. January 2011 my body seemed to be reacting to everything. In fact, because the symptoms were so pervasive (I had stomach issues and was low in vitamins, iron, B12, Calcium, Magnesium, ferritin…), I had nerve issues (tingling and numbness) and swelling throughout my body, but worst in shoulder, hips and right side of face; as well as weird swelling between my shoulder blades and the right side of my face (vagus nerve issue?).  In October 2012 I realized that food was likely the culprit but couldn’t narrow it down to anything in particular, but not eating meant no sweating and better stomach.

Three weeks ago I gave up gluten and felt a little better (less gas), but still had sweating  and swelling. I think dairy is at least one of the culprits. I read this article today and am going to try the paleo diet. I do know that my salad of strawberries, romaine, almonds and sunflower seeds (sometimes apples and/or mandarins as well), usually goes down fairly well.  I am going to have to learn how to cook though, and give up corn and eggs and nightshades, which I had been consuming a lot of since going gluten free.

I have also read that once the small bowel is damaged (mine is), that other intolerances develop. So, if gluten damaged my small bowel (without villi damage)

Check out this article on milk, gluten & thyroid:

I do think some of the nerve problems are related to the vagus nerve, particularly the right sided face and neck issues. Here’s an article on the vagus nerve:

Sweating and milk allergy:

So I have gained a fair amount of weight since my Graves went into remission (still have antibodies). My TSH is normal but I have Thyroid Peroxidase (TPO) Antibodies (TPOAb) / Antithyroid Peroxidase Antibodies  levels of 198.

I don’t know what this means exactly, except that it’s associated with Hashimotos and my doctor never told me this (even though I asked specifically). I found it on my medical records. It’s also associated with pernicious anemia, and even before I had Graves, my B12 level is 170 (doctor never thought it was an issue, never told before, I found it on my records).

For the last 3.5 years I have had HORRIBLE digestive symptoms and low levels of iron, b12, magnesium, calcium and D.  Not sure if there is a link, but something is off and my old doctor outright lied when I asked her about Hashimoto’s antibodies.  And as I just checked, my Graves Disease antibodies Thyroglobin AB was NEGATIVE!!! Never knew this.

  • Free T4 is 10.
  • Free T3 is 4.7.
  • TPO is 198.
  • TSH 0.98
  • Triglycerides 2.66!
  • Albumin 41
  • Thyroblobin AB – negative

I have come off gluten for 4 days and have a great improvement in my gut symptoms, and it makes sense now since Hashimoto’s is associated with gluten problems.  So confused, but this makes more sense with the symptoms I’ve been having: VERY dry hair and skin, eczema, digestive issues, numbness and tingling, low ferritn, calcium, b12, magnesium and vitamin D, not to mention weight gain.

 

I recently switched doctors, which gave me access to my medical records. I found out some surprising things that my doctor never told me. Apparently, I have high triglycerides 2.66 MMOL/L (I’m mid 30s female). This happened as soon as my Graves disease started going into remission. I wonder if I’ve been having mild bouts of acute pancreatitis or papillary stenosis ( a disturbance of the sphincter of Oddi, a muscular valve, that prevents the opening and release of bile or pancreatic fluids into the duodenum in response to food entering the duodenum.)

I also had a colonoscopy and and upper GI scope, and she told me it was normal, but the report said that I had proximal small bowel mucosa with minimal focal intraepithelial lymphocytes, without specific pathology. “It may be nothing noteworthy, but it comes up with inflammatory bowel disease and says can be seen with early gluten sensitive enteropathy.”  So, am I gluten sensitive? Will going gluten free help? I tested negative for Celiacs, but..I have heard gut dysbiosis can make you sensitive to foods you normally can eat. Going to try it for a little while to see if it helps.

t-IgA = 5 KEU/L

 

Update July 27, 2014

So, I have given up gluten for only 4 days now and have noticed a big improvement in my gas and bloating, and believe me, I am/was the world’s biggest skeptic. Two things made me give this a try: a) my daughter has terrible, eczema on her hands and green, mucousy poops, and b) and upper GI scope that says small bowel inflammation, but not Celiacs.  So, I was desperate and gave it a try – half-hearted at first, but after seeing a difference, I’ve been getting stricter, until today…at a bridal shower. I had half a sandwich and BOOM!  My stomach is in agony.  Now, whether it’s gluten, or wheat, it’s the first time I’ve had it in days and boy did it react with me.  Doubled over with stomach pains and gas. It doesn’t last forever, but when I was eating Mini Wheats twice a day, breakfast and afternoon, I felt like every food was bothering my stomach.  I can NOT believe it could be gluten, but my daughter’s poop is already back to a brown colour and her hand eczema is 80% better (until today, when her father, a non-believer, fed her TimBits and a hamburger with a regular bun). Her hand is already more red and she’s been farting and burping. It sucks.

I really don’t want either of us to have this condition, but the gas pains are just too much for me, and I hate to see my daughter face similar symptoms.  Throughout my life my symptoms have waxed and waned and it seems my thyroid has been the breaking point for me – the second it started going into remission my problems with food/gas began.  As a baby I was always constipated (like my daughter), and have had horrible gas my whole life, which was worse during puberty and during University. It was not bad after my first daughter, in fact, I felt great! When my Graves was at it’s worst, my digestion was at it’s best, ironically.  Now, with Graves in remission (but with anti-bodies which haven’t changed from 198), my stomach is a disaster!

So, I will keep you updated on how the gluten-free thing works out. At the very least, my very picky-eater daughter is trying more foods. She actually has latched on quite positively to this gluten-free kick, which was a humongous surprise to me, since she really is a very picky eater.  Maybe it’s not the worst thing in the world, this gluten-intolerance thing.

Good bye, my beloved fresh buns. I will miss you!

 

Update July 31

1 week off gluten and I realize there is more going on than just a gluten sensitivity. I know milk is an issue for me, so I tried soy milk in my coffee and my nose instantly started running.  I had a reaction after dinner last night and I can’t figure out what caused it: I had chicken (I baked myself), potatoes, and a bowl of gluten-free Chex with coconut milk.  I also had a green tea and a iced-tea.  So, maybe tea doesn’t agree with me? Weird.

I used to swell up – go all red and puffy after eating and would sweat. That has stopped!  My thyroid is still not controlled (T4s are the the bottom of the normal range at 10 pmol/l or .777 ng) and I wonder if that was corrected if I’d be less sensitive.

My “allergies” or “sensitivities” started all of a sudden – basically in January 2011 I could no longer eat what I wanted. This is also when my t4 was at 9.7 pmol/l, the lowest it’s been.  So, I think there is a hypothyroid connection here.  In fact, six months later my t4 was at the same level and I was in really bad shape. I was 5 months pregnant at this point and was swollen like I was 9 months pregnant. I started taking lots of supplements for the remainder of my pregnancy, and not sure if that helped, but when I was 9 months pregnant I felt the best I had the whole pregnancy. After my daughter was born, things quickly spiraled back to where they were, although I didn’t realize the food connection because it wasn’t immediate and because I couldn’t figure out which foods bothered me.  But I finally realized that eating made me sweat, in between my shoulder blades and up the right side of my face. Weird, I know.

Just curious what other reactions to food people have had while being hypothyroid and what your free t4 levels are!

Read the comments in the link below. Some of these stories resonate so much with me!!

http://glutenfreegirl.com/2011/05/symptoms-of-celiac-and-gluten-sensitivity/