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Newbie At The End Of Her Rope

laughs2loud

By laughs2loud
in Coping with Celiac Disease

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laughs2loud Newbie
laughs2loud
Posted

Ok, so I was diagnosed in early June of this year. I had two negative blood tests, and a biopsy that showed lots of white blood cells, and which my doctor said was positive for celiacs.

I have been as damn close to gluten free as I can imagine. Yes, there have been a few slip ups (always when I try to eat out, which is rare now), but at home, I am close to gluten-free as I can be. I've checked shampoos, and other such things. I've called companies. I have read about 15 books on celiac disease and gluten-free. I am doing EVERYTHING I can think of that's right.

So why don't I feel ANY better? The first few weeks, I thought things might be getting better, but now I'm sick ALL the time. Last night I couldn't even get out of bed (except to run to the bathroom every 5 minutes). In the last 2 weeks I've averaged one meal a day (if that) because I can't stomach anything else. What is going on? What am I doing wrong?

All I know is that this is miserable. I think I feel worse than when I was still eating gluten.

Anyone have any suggestions? How long did it take you to start feeling better? What should I do next?

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JNBunnie1 Community Regular
JNBunnie1
Posted

It sounds to me like you might be dairy intolerant. Do you eat much dairy, and do you notice if you feel better or worse afterwards?

Lisa Mentor
Lisa
Posted
Ok, so I was diagnosed in early June of this year. I had two negative blood tests, and a biopsy that showed lots of white blood cells, and which my doctor said was positive for celiacs.

I have been as damn close to gluten free as I can imagine. Yes, there have been a few slip ups (always when I try to eat out, which is rare now), but at home, I am close to gluten-free as I can be. I've checked shampoos, and other such things. I've called companies. I have read about 15 books on celiac disease and gluten-free. I am doing EVERYTHING I can think of that's right.

So why don't I feel ANY better? The first few weeks, I thought things might be getting better, but now I'm sick ALL the time. Last night I couldn't even get out of bed (except to run to the bathroom every 5 minutes). In the last 2 weeks I've averaged one meal a day (if that) because I can't stomach anything else. What is going on? What am I doing wrong?

All I know is that this is miserable. I think I feel worse than when I was still eating gluten.

Anyone have any suggestions? How long did it take you to start feeling better? What should I do next?

Welcome to the forum!

I would suggest that you go dairy light or eliminate it all together. After some healing time you can introduce it again.

Have you checked your cosmetics, medications, vitamins, shampoo, toothpaste, lotions. Do you use a separate dedicated toaster, old wooded utensils or shared scratched pots and pans.

I have never heard of "a lot of white blood cells as a description/diagnosis for Celiac (not celiacs). I am not sure what they actually look at in a biopsy sample.

Many people take several months to feel better. It's almost impossible to go 100% gluten free over night. There is just too much to learn and there are too many unsuspecting traps.

Try to revisit what you put into your mouth and see if there are some things that you might have missed. And learn as much as you can from this forum, it's your best source.

laughs2loud Newbie
laughs2loud
Posted
  • Author

I'll try going dairy free for a while, but if feels like EVERYTHING I put in my body makes me sick lately. Certainly worth a try, though.

It's just frustrating because it's been 4 months post-diagnosis, and eveyone I talk to says they started feeling better almost immediately.

How long did it take you out there to start feeling better? And how long after being accidentally "glutened" does it take you to feel better?

ConnieA84 Rookie
ConnieA84
Posted

Wow reading this post feels like someone is reading my mind. I am in the exact same boat in fact I posted something about dairy free last week out of frustration. I have been Gluten free for 2 months and am in the same boat of not feeling any better. A lot of people seem to feel relief in a few weeks but I was still having symptoms. About a week ago I posted asking about people who have gone diary free in addition to gluten free. A lot of people seem to think it was a good idea so I decided to give it a try, I couldn't feel any worse. I am very happy to announce that after three days of going dairy free My "stomach" issues are almost done, my clothing fits better, and I feel like I am finally on the road to relief. I had been avoiding going dairy free as it was difficult enough to cut out gluten. I tried taking lactose pills but they did nothing. So I would suggest as well to go dairy free, try it for a week and be religious about it, if that does not help try cutting out soy as that can also be difficult for people to digest.

Hang in there I completely sympathize with you it's so frustrating to be diagnosed and then not get relief. Keep trying there is something that your eating that is still causeing problems and when you find it you know....

Let us know how it goes we can all benefit from others experience...Connie

JNBunnie1 Community Regular
JNBunnie1
Posted
I'll try going dairy free for a while, but if feels like EVERYTHING I put in my body makes me sick lately. Certainly worth a try, though.

It's just frustrating because it's been 4 months post-diagnosis, and eveyone I talk to says they started feeling better almost immediately.

How long did it take you out there to start feeling better? And how long after being accidentally "glutened" does it take you to feel better?

Everyone is different with recovery. Some people are a day or two, I take a full month. I'm a very unusual case though, I've never heard anybody else say that happens, so don't start worrying about THAT.

It's usually recommended that people go dairy free along with gluten free, because we so frequently have dairy problems as well. Casein (case-in, pronounced) is the protein in milk some people react to. This is not lactose intolerance, so taking a lactase pill would not help. It actually took me over a year to get completely better, after going gluten free. I think you should really drop dairy and see how you feel after a few weeks-month.

mftnchn Explorer
mftnchn
Posted

I agree with the milk and possibly soy suggestions.

Also you could have some other food sensitivities, which could also be temporary. Some have had testing done. Others do elimination diets.

I got worse initially instead of better. It was like my body was totally overhauling itself to adjust to Gluten-free Casein-free. I think it was also the trigger for a recurrance of my lyme disease and I had to restart treatment.

I am now feeling relatively good, but still don't have normal digestion and elimination as well as a lot of sinus problems.

Have you tried a diet that is extremely easy to digest? Vegetables soft and highly cooked, etc.

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loco-ladi Contributor
loco-ladi
Posted

AFter an accidental glutening I am worthless for the next 2-3 days, and dont even think I am getting more than 5 feet from the nearest bathroom...... the 4-6 day period is "the brain fog" where dont ask me to do anything important cause I hardly know my name let alone anything else.... After that lifts it normally is about 24 hours later that I feel back to my current normal self.

So if ya add all that up I take a week or so to fully recover.

ravenwoodglass Mentor
ravenwoodglass
Posted

Are you eating mostly unprocessed naturally gluten free food or are you eating mainstream foods that appear gluten-free by the label? Are you checking every product that has natural flavors? Do you drink alcohol? Many with gluten intolerance can tolerate distilled grains in alcohol and vinegar but many do not. Have you checked all meds, even OTC ones? There are not regulations about gluten in OTC or script drugs and many of the preperations sold for tummy problems are not gluten free. Beano and Tums are in this group. Are you doing any remolding or are you into crafts? Many of the stuff like wallpaper paste, drywall and it's compound, glues, paints and clays are not safe. I thought I was in serious trouble when I remodeled after being gluten-free for about 6 months and got sooo very sick. I was doing drywall, finishing and hanging and never thought about it till I was almost done with the project and doubting I would ever be able to finish.

FootballFanatic Contributor
FootballFanatic
Posted

Check any medications by the manufacturer, not pharmacist and not glutenfreedrugs.com,

There are many generics and they alll have different formulas.

laughs2loud Newbie
laughs2loud
Posted
  • Author

Thank you all so much for the response! I will try eliminating dairy. Also, those supplements are def worth a try too.

Is it worth a trip back to the doctor? I'm not on any meds right now (he took me off Birth control, cause there was something on my liver, and there will be a follow up CT scan for that next month), so it's not meds. I'm not remodeling, or crafting. Yesterday, all I ate was vegetables...still got sick. Mostly, I am eating foods I know to be gluten free by design...like things I buy from GFMall, or amazon's gluten free list.

Is it worth a trip back soon? Or is that a waste of my money?

JNBunnie1 Community Regular
JNBunnie1
Posted
Thank you all so much for the response! I will try eliminating dairy. Also, those supplements are def worth a try too.

Is it worth a trip back to the doctor? I'm not on any meds right now (he took me off Birth control, cause there was something on my liver, and there will be a follow up CT scan for that next month), so it's not meds. I'm not remodeling, or crafting. Yesterday, all I ate was vegetables...still got sick. Mostly, I am eating foods I know to be gluten free by design...like things I buy from GFMall, or amazon's gluten free list.

Is it worth a trip back soon? Or is that a waste of my money?

I'm not really sure what a doctor can do for you at this point. Also, be careful with 'whole food' supplements, they frequently have wheat grass juice in them, which i understand is not safe. I would say take a B vitamin complex supplement for now and try to get enough protein in your diet, it will be needed for healing your intestines. Also, try to get a lot of fatty veggie stuff, like raw olive oil drizzled on your cooked veggies and use avocado a lot. Those fats will help you digest the vitamins you need. One of my favorite meals is scrambled eggs with chopped avocado and salsa.

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