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Newly Diagnosed

Mac0030

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cyclinglady Grand Master
cyclinglady
Posted

Hi Mac,

 

When the tips of your villi are damaged, some of the first things not to get absorbed are calcium and iron, along with some enzymes like those that break down milk lactose.  As your intestines heal, most folks here have been able to add dairy back in, but some do not (I'm still hoping).  If dairy does not bother you, then keep eating it.

 

A good probiotic helps balance out the intestinal colony of good and bad bacteria and fungus.  It will help in healing.  I've taken it for years and always after taking a course of needed antibiotics (e.g. post surgery).  Others have suggested L-Glutamine for intestinal healing too.  I started taking it -- anything to aid in healing.  I fractured my T-9 vertebrae a few months after my diagnosis and I need to build bone!  Taking lots of calcium and am on Hormone Replacement Therapy for bone building as well.  A bone scan is something to think about.  I had one after my fracture (btw, it fractured spontaneously).  

 

My main symptom was anemia caught during a routine colonoscopy pre-op visit.  Doctor noticed I was still anemic even though I had not had a period in four months.  He then ordered an endoscopy when my Celiac blood panel came back positive.  

 

My transition to the gluten-free diet was relatively easy since my husband has been gluten-free for 12 years.  What are the odds that both of us have gluten issues?  Of course, I still went through a mourning phase, but I got over it. 

 

Take care!

 

I'm off to the kitchen.  Baking a gluten-free mayo chocolate cake 'cause I'm craving chocolate (and my daughter requested it!)

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squirmingitch Veteran
squirmingitch
Posted

Mac, make sure that multi vitamin is gluten-free. You can also eat yogurt --- greek is preferred b/c of the 5 live active cultures in it.

 

Okay, so you cleaned out the kitchen & checked all the labels for ingredients. Now do it again. Why? Because things can be missed. It happened to me. I started in Sept. 2011 & thought I had everything figured out. I was so proud of myself. I had checked every label in the cabinets & fridge. Thanksgiving came, we ate pot roast, after dinner my hubs just happened to be reading the label on the Knorr Homestyle Stock Beef Stock. Uh oh! It had wheat listed right there on the label. So while I thought I had been gluten-free, I was in fact NOT! The chicken of their homestyle stock was gluten-free but the beef was not. Did I just read the chicken one twice thinking i had read each one? Or did I miss wheat on the tiny printing on the beef one? I don't know but it taught me a good lesson. When you think you did a good job of it ~~~ go back & do it again & make SURE you did a good job of it. And that my friend is why my signature line says I went gluten-free on Dec.1st of 2011 instead of October 1, 2011. I would not wish the same thing to happen to you. Any job worth doing is a job worth double checking. :)

 

And your new motto for the rest of your life (& all celiacs) is:

Every label, every time.

 

Read every label, every time. Don't rely on old standbys & think they are safe. Manufacturers change ingredients & formulations all the time. So read every label every time. Every time we go to the store we should read every label of every thing that goes in our cart no matter how harmless that item may seem. Live by it & live. :)

GFinDC Veteran
GFinDC
Posted

Hi Mac,

 

As others already said, dairy is often a problem for  people newly diagnosed.  But if it is not bothering you, then go ahead and eat it.  We are all a little different, and my suggestion are for the majority, but don't fit each individual every time.  Actually, some of us are more than a little different!   :)  But that's what makes people interesting.

 

Vitamin and mineral deficiencies are common in us before starting following the gluten-free diet.  You might want to get a bone density scan done.  Many celiacs have lowered bone density before starting the diet.

 

Once your gut starts healing and rebuilding the villi that line your small intestine, things may get a little hairy.  The increased surface area of the gut lining provides a much larger area for bacteria to latch onto and grow.  That may lead to changes in the gut bacteria flora balance.  Which can cause digestion symptoms.  That why taking pro-biotics is a good idea, and cutting down on sugars and carbs.  Sugars and carb feed the bacteria and can increase bloating and discomfort.  Another possible cause of bacterial imbalance is the change in diet, which can be a dramatic change for some many people.

 

If your nutritionist is not familiar with treating patients with celiac disease, they may not be much help.  Typically they don't know as much about it as the people on this forum do, although there are exceptions.

 

I suggest you write your symptoms down in your food journal, including physical and mental/mood symptoms.  It may be very interesting for you to look over those later on, after you have been gluten-free for 6 months or so.  You very well may find things changing or improving that you never thot of having been related to the food you eat.  Things like nails and hair growing faster, putting on weight, increased hunger, better mental outlook, better memory, improved skin and circulation, improved sleep, improved vision, etc are not typically thot of as being food related.  But for us many things are affected by diet.  Our bodies can't heal without proper nutrition, and mal-absorption from villi damage causes poor nutrition.

 

There is lots to learn about living gluten-free, but we are here to help.  :)

massagemamaof3 Rookie
massagemamaof3
Posted

Not ballking at gluten free at all. Want to get as much information as possible. Already started marking things and by January 1 no gluten in my future. I had never heard of celiac disease prior to the diagnosis it seemed to have come completely out of left field.

The endoscopy was because I had a complete physical and lack one half of a family history. My doctor recommends endoscopy now instead of at 50 solely because I don't know one half of my family tree history for any medical problems. Also sent to cardiologist for a complete work up.

I already eat fruit and veggies fresh. Live on rice cakes and peanut butter. Thankfully pasta isn't a staple but bread with my homemade soups and bagels living here in New York is a problem. The beer no big deal casual drinker who will just switch to something like vodka of gin on that occasion. What I am fining surprising is all the hidden places that gluten can be. I am also lucky enough to be married to a woman who will now be the gluten police. I had to,change my diet once to lose 40 pounds this looks to be another change. As I said trying to get as many helpful tips as I can. Thank you all.

Be careful on the vodka, only ciroc (sp) is gluten free. however rum, tequila, Cognac, and wine are gluten free. 

squirmingitch Veteran
squirmingitch
Posted

Be careful on the vodka, only ciroc (sp) is gluten free. however rum, tequila, Cognac, and wine are gluten free. 

I have to argue with that statement. There are many vodkas not made with wheat. All you have to do is Google it. Chopin is one. But regardless of that; the distillation process for hard liquor removes any gluten so let's not go promoting fear for lack of knowledge.

IrishHeart Veteran
IrishHeart
Posted

Be careful on the vodka, only ciroc (sp) is gluten free.

 

OOH, not  true, hon.

 

I drink Smirnoff, Absolute, Stoli sometimes--ALL gluten free.

 

Believe me, if vodka were not G F, I'd be dead by now. Cheers!

Mac0030 Newbie
Mac0030
Posted
  • Author

So far it has been 12 days gluten free as far as I know. I have been reading ingredients , eating more whole foods and watching closely and this doesn't mention that I am married to the gluten police chief. I had no symptoms to begin with and do not yet notice a positive change. However, my stomach is like a gurgling machine, I am often bloated and my BM is well different. Throw in the fact that I am tired most of the time and this is where I am.

Is this typical?

With that said I am trying many gluten free foods which are great.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

So far it has been 12 days gluten free as far as I know. I have been reading ingredients , eating more whole foods and watching closely and this doesn't mention that I am married to the gluten police chief. I had no symptoms to begin with and do not yet notice a positive change. However, my stomach is like a gurgling machine, I am often bloated and my BM is well different. Throw in the fact that I am tired most of the time and this is where I am.

Is this typical?

With that said I am trying many gluten free foods which are great.

 

Yes, I believe this is normal.  You've changed your diet and are eliminating gluten - either of which could cause changes in your digestive system.  Many report getting new or worsening symptoms when they first go gluten-free - but then it gets better.

 

As far as the "gluten-free foods" - if you mean processed stuff, please read the labels carefully.  Not all that is gluten-free is actually healthy... and especially in the beginning your body may not be ready for the additives, additional fat, high sodium, etc. that can be in processed stuff.

GFinDC Veteran
GFinDC
Posted

Hi Mac,

 

Yes, it is typical to have bloating and discomfort at first.  At first can mean months too, not weeks.  Your gut is starting to heal, and that means lots of things are changing in there.

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