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Karrin

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Karrin Rookie

I was diagnosed with Celiac disease via blood work back in June, felt great for awhile, but am now back to how I felt before - if not worse. On top of celiac disease I've tested positive for RA. I also have endometriosis, reynaulds, and my rheumatologist and I are on the hunt - possibly for lupus. I've been feeling really overwhelmed. I stick to the diet and it doesn't seem to be doing me any good. I'm tired of being tired and sick of being sick. Recently my hair has begun falling out in nice handfuls and my stool is yellow/brown and the food doesn't seem to be digested. The gnawing feeling in my stomach is back and I'm nauseous all day. I'm also getting migraines and a bit of head fuzz (which I blame more on my total fatigue - I can barely make it to the shower most days). I've never had migraines before, the head fuzz yes, but never headaches! I generally get constipated when I get glutened. I've also noticed everything tends to get worse about the time I ovulate and around my period. I'm really at a loss as to what's going on. I've been so careful.

I was wondering if maybe it could be ulcers left over from the disease? I indulged in two cups of coffee back in September and had one (alcohol) drink (at a gluten free restuarant) and that's when my digestive symptoms seemed to return (I'd been feeling tired previously). I got pretty ill from both, a lot of nausea and back pain. I'm grasping at straws. I begin predizone Monday and if that doesn't help me I might lose my mind.

Has anyone else had ulcers? Or perhaps something similar? Anything! :(

My husband and I desperately want to get pregnant, but I had a miscarriage in July after years of nothing and I know it is because something is still wrong with me.


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haleym Contributor
I was diagnosed with Celiac disease via blood work back in June, felt great for awhile, but am now back to how I felt before - if not worse. On top of celiac disease I've tested positive for RA. I also have endometriosis, reynaulds, and my rheumatologist and I are on the hunt - possibly for lupus. I've been feeling really overwhelmed. I stick to the diet and it doesn't seem to be doing me any good. I'm tired of being tired and sick of being sick. Recently my hair has begun falling out in nice handfuls and my stool is yellow/brown and the food doesn't seem to be digested. The gnawing feeling in my stomach is back and I'm nauseous all day. I'm also getting migraines and a bit of head fuzz (which I blame more on my total fatigue - I can barely make it to the shower most days). I've never had migraines before, the head fuzz yes, but never headaches! I generally get constipated when I get glutened. I've also noticed everything tends to get worse about the time I ovulate and around my period. I'm really at a loss as to what's going on. I've been so careful.

I was wondering if maybe it could be ulcers left over from the disease? I indulged in two cups of coffee back in September and had one (alcohol) drink (at a gluten free restuarant) and that's when my digestive symptoms seemed to return (I'd been feeling tired previously). I got pretty ill from both, a lot of nausea and back pain. I'm grasping at straws. I begin predizone Monday and if that doesn't help me I might lose my mind.

Has anyone else had ulcers? Or perhaps something similar? Anything! :(

My husband and I desperately want to get pregnant, but I had a miscarriage in July after years of nothing and I know it is because something is still wrong with me.

Wow that sounds like a bummer. Im sorry to hear about your recent bout of sickness! I wish I had more to say that would be helpful but... MAN, that bites!

A lot of people can sometimes develop other food sensitivities. In my experience, my thyroid is out of whack and until I got that under control, I was very tired, sick feeling, cold all the time. They also say that hair can start falling out and digestion can get funny again as well. If you can, I would get your thyroid function checked. It's an autoimmune thing, and is more common in those of us with gluten intolerances and other autoimmune issues. Good luck!

srthomas21 Explorer

Sorry you are having so many issues. Some things to check for...have you had your ferritin levels checked? Celiac can cause all sorts of malabsorbtion issues and my ferritin levels were really low and it was causing all sorts of weird issues. Especially fatigue and it can cause hair loss.

Your ferritin levels should be around 70 even though the normal range goes all way down to 20. Mine was at 7 and at that level I really felt bad. I was not anemic either, all my other bloods were good so you need to check for ferritn and not just the normal stuff.

You should be on a good gluten free vitamin. (I take the Gluten Free version of Bio-35.)

You also need to really be on a good dose of probiotics I have tried several and I have found PB8 to be the best but you might have to try a few until you find one your body likes. I'm also adding in Culturelle as well. Probiotics can make a huge difference.

I also had H Pylori pretty bad and that was messing up my digestive track even more.

My doctor told me that something like 70 percent of the immune system resides in the gut and if you don't heal your gut you get all sorts of other symptoms and problems.

It can take a long time for things to heal up but you can do things (like probiotics) to help speed it up. I take 4 capsules of PB8 daily and it has really helped. I also completely cut out soda from my diet and it has helped as well.

You could also try digestive enzymes as well to help the food digest better.

There is also a good possibility that you may have some type of intestinal yeast overgrowth like candida. You could try adding in Candex for a few weeks to see if that helps. Yeast overgrowth can cause all kinds of weird symptoms and problems and getting rid of it is just part of healing your gut. If you have been on any antibiotics in the past it wipes out both good and bad bacteria.

Hope that helps.

CarbQueen Newbie

My mood is just starting to normalize. It was annoying how my mood would fluctuate wildly. Some days I felt like I had roid rage or bipolar disorder.

In May '09 I was diagnosed with gluten sensitivity which quickly progressed to intolerance because I was having difficulty maintaining my diet over the summer. It was torture watching friends party and enjoy food and drinks I had to abstain from.

At the end of the season I finally caved in to my cravings and over indulged at a large gathering. It happened during the time I had to stop the gluten-free diet to be tested to GI. The onset of arthritis and other autoimmune symptoms was so fast and severe, I thought I would die. Within days I returned to my gluten-free diet.

It has been 3 months since that incident, and I am grateful to abstain from gluten products. Now, I view gluten products like toxic chemicals

All the arthritis and autoimmune symptoms are gone. I'm in remission, and carefully monitoring my diet again.

Hope you feel well soon.

Karrin Rookie
Wow that sounds like a bummer. Im sorry to hear about your recent bout of sickness! I wish I had more to say that would be helpful but... MAN, that bites!

A lot of people can sometimes develop other food sensitivities. In my experience, my thyroid is out of whack and until I got that under control, I was very tired, sick feeling, cold all the time. They also say that hair can start falling out and digestion can get funny again as well. If you can, I would get your thyroid function checked. It's an autoimmune thing, and is more common in those of us with gluten intolerances and other autoimmune issues. Good luck!

Thanks. I'm feeling a lot better today. I started the predizone yesterday morning. I woke up feeling wretched, pale yellow skin, rash, achy joints, sick to my stomach etc, etc, but around 4pm it was like someone had flipped a switch. I had energy and a clear head! I can hardly believe it worked so fast. I'm feeling great today too. I'm optimistically pessimistic (hah) that it is the medicine. I've had sudden recoveries like this before and a day, week, month later I'm worse than ever again.

I've had my thyroid checked a few times - I can't recall when the last was though. I've had so many tests taken I can't recall half of them. It was always normal.

Karrin Rookie
My mood is just starting to normalize. It was annoying how my mood would fluctuate wildly. Some days I felt like I had roid rage or bipolar disorder.

In May '09 I was diagnosed with gluten sensitivity which quickly progressed to intolerance because I was having difficulty maintaining my diet over the summer. It was torture watching friends party and enjoy food and drinks I had to abstain from.

At the end of the season I finally caved in to my cravings and over indulged at a large gathering. It happened during the time I had to stop the gluten-free diet to be tested to GI. The onset of arthritis and other autoimmune symptoms was so fast and severe, I thought I would die. Within days I returned to my gluten-free diet.

It has been 3 months since that incident, and I am grateful to abstain from gluten products. Now, I view gluten products like toxic chemicals

All the arthritis and autoimmune symptoms are gone. I'm in remission, and carefully monitoring my diet again.

Hope you feel well soon.

Ugh, I know what you mean. I always can guess when I've accidently cc'd myself (I generally don't get GI symptoms anymore). I get so moody - crying one moment and the next ready to tear someone limb from limb. I also get creepy crawlies under my skin which makes it hard to rest - the traveling itch you just can't scratch!

I was (I thought) in remission as well (about 3 months), but I suspect now something more is going on with my immune system after all. I've started my autoimmune suppressants and within hours, immediate relief! I'm hoping this is it and not some fluke coincidence. My joints are sore today, but not quite so bad and I actually managed to read a book last night and hold it for a few hours straight. Normally this would have killed my wrists and fingers (and head)! I even have a bit of color back today. I'm crossing my fingers...

Karrin Rookie
Sorry you are having so many issues. Some things to check for...have you had your ferritin levels checked? Celiac can cause all sorts of malabsorbtion issues and my ferritin levels were really low and it was causing all sorts of weird issues. Especially fatigue and it can cause hair loss.

Your ferritin levels should be around 70 even though the normal range goes all way down to 20. Mine was at 7 and at that level I really felt bad. I was not anemic either, all my other bloods were good so you need to check for ferritn and not just the normal stuff.

You should be on a good gluten free vitamin. (I take the Gluten Free version of Bio-35.)

You also need to really be on a good dose of probiotics I have tried several and I have found PB8 to be the best but you might have to try a few until you find one your body likes. I'm also adding in Culturelle as well. Probiotics can make a huge difference.

I also had H Pylori pretty bad and that was messing up my digestive track even more.

My doctor told me that something like 70 percent of the immune system resides in the gut and if you don't heal your gut you get all sorts of other symptoms and problems.

It can take a long time for things to heal up but you can do things (like probiotics) to help speed it up. I take 4 capsules of PB8 daily and it has really helped. I also completely cut out soda from my diet and it has helped as well.

You could also try digestive enzymes as well to help the food digest better.

There is also a good possibility that you may have some type of intestinal yeast overgrowth like candida. You could try adding in Candex for a few weeks to see if that helps. Yeast overgrowth can cause all kinds of weird symptoms and problems and getting rid of it is just part of healing your gut. If you have been on any antibiotics in the past it wipes out both good and bad bacteria.

Hope that helps.

I've never heard of checking for ferratin. I'll have to look into that. As for the rest I'm doing great today. :) I'll keep everyone's suggestions in mind though if the medicine I'm on doesn't do the trick.


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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