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nikki2008

If I've Been Gluten-free For Five Days...

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If I've been gluten-free for five days, and still have symptoms such as lower abdominal gas pain (but the pain is milder than it was previously), abdominal bloating, irregular bowel movements (but that's improved too), wheezing, coughing, and leg swelling -- does that mean I don't really have Celiac?

I still have circles under my eyes, and am pale, and get tired more easily than I like, but my energy has definitely improved. Besides the abdominal bloating and pain, the most disconcerting thing is that I often start to wheeze when I try to talk. My symptoms came on suddenly after eating lots and lots of whole-grain bread, in an effort to "improve" my diet.

I thought I'd feel much better than this after five days gluten-free (with the exception of Beano, which I stopped using two days ago when I learned on this forum it could be a problem).

How will I know when it's okay to start phasing back in fruits, vegetables, beans, and yogurt? Right now I'm living on chicken breasts and bananas, the mildest things I've found.

Any advice?

Thanks in advance.

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Nikki,

It took a long time for you to get this sick, it will take some time for all of your symptoms to go away. The fact that you know you are doing better proves to you that you are doing the right thing.

I still have circles under my eyes, and am pale, and get tired more easily than I like, but my energy has definitely improved.
Your energy has definitely improved, that's great! The dark circles will remain for a long time. You probably will have to take a good multiple gluten free vitamin to help get rid of the dark circles, I still have dark circles after 8 yrs, but I have other allergies too. When you have been sick for a long time, you do not get better in a few days, it takes time, you have to be patient. Over time, you will feel better.

You should eat simple meals for a few months anyways. Chicken, veggies, rice, potatoes, simple fruits--nothing processed. Try to stay away from processed foods, even the gluten free things like cereals, crackers, gluten-free breads. Give yourself time to heal more, then introduce more things.

Feel better.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Thanks. I really appreciate the advice. Do you think something like Lundberg rice cakes is OK? Right now, I don't have a kitchen where I live, so it's really hard to prepare food, so I'm thinking about trying some baby food like pureed carrots and sweet potatoes. What confuses me is, although the excruciating stomach cramps I had are gone, the bloating is just as bad as ever. Do you have any idea how long the bloating generally lasts?

And even thought I've stopped eating gluten for five days, I have developed swelling in my legs, and suddenly my mouth is extremely dry all the time, and I don't know if that's a stage of the recovery, or if the leg-swelling is a sign I'm not getting enough protein. I bought some Ensure yesterday and I'm going to try it, but I'm afraid it will bring back the stomach cramps.

Two weeks ago, I tried probiotics, and I thought I was going to die that night, so I'm afraid to try anything new, and I'm concerned about bringing yogurt back into my diet, although I love it and I really need the calcium. I feel hungry all the time, but it's hard to eat when paradoxically, you're so bloated that your stomach feels full, even though your mind is hungry for food. Do you think it's safe to try eating simple foods like sardines and salmon and harboiled eggs? I would really appreciate any advice.

The last time I had stomach cramps was when I had a big bowl of Thai (wheat) noodles six days ago. The pain that night was so excruciating, I'm extremely wary of eating anything which will bring the cramps back again. The Thai noodles were whole wheat, and in a way, it's good I had them because it made me realize I have Celiac. For two days afterwards, my bowel movements were yellowish and mucusy and really painful, but since I've stopped eating gluten, that's subsided.

The constant bloating which makes it hard to eat is the biggest problem now, and Gas-X only helps a little. I'm also taking Pepcid intermittently. I'd love to know if it's safe to go back to using Beano.

I've kept getting better and then worse again for the last couple of months, and I believe that's because every time I started feeling better, I'd crave pizza, noodles, and bread, and unwittingly start the whole process again. It's ironic that you crave the very thing that you should avoid, which creates a vicious cycle. I would feel better if at least I thought the bloating and drymouth and leg-swelling were normal after not eating gluten since I had three big bowls of salty, spicy whole-wheat noodles last Saturday.

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The yogurt might be ok, make sure you have a gluten free brand--probiotics are too much for me. I would not try sardines and salmon yet--freash salmon, maybe, but not sardines. Not sure about the eggs either, egg whites are usually very mild, the yolks are harder to digest. You really need to keep things simple. I never had a problem with dairy, so in the beginning, I ate cottage cheese and applesauce, or peaches, pears--things like that. I did eat ricecakes too--if you like Lundberg, they should be ok. I never gave up my peanut butter either. I use Skippy Natural.

As for Beano, I am not sure it's safe. I understand the company says the amount of gluten in it is safe, or something like that, but I don't use it, so I can give you an opinion. I don't think I would use it. I have used a product made my Walmart's Equate called Extra Strength Gas Relief.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Thank you so much for your answer. I tried some Earth's Best fruit baby food today and did well with that, but I don't know when it's okay to start phasing in oranges or other whole fruits or something acidic like tomato sauce. Would you recommend white rice? What about a very small portion of well-cooked beans, for protein? Any other foods that are very mild and good to phase back in. Thank you. I think I will avoid the Beano.

One more thing -- on cereal boxes which say "gluten-free" and also say, "Prepared in a facility which processes wheat," is cross-contamination really a problem -- or overly cautious?

Do you happen to know how common wheezing, hives, and leg-swelling are, as symptoms?

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Please do not eat any gluten free cereal at this time... wait...

if you have a microwave, wash a sweet potato, poke a couple of holes in it with a fork & put in a glass dish & microwave until soft. You could try some well cooked white rice. cook some carrots - just slice carrots into a glass bowl - maybe drizzle on a little honey & cinnamon & cook in microwave.

Try porkchops or Boars Head Deli Meat. Skip the beans for now, they are hard to digest for some people & are a high lectin food.

Lundberg is a good gluten free brand.

For fruit try apples - baked, & pears - which you can also bake if you are not doing well with fruits.

Please do not try dairy at this time - wait till you are better...

are you drinking sodas? You might want to go with just plain water or diluted 100% Welch's grape juice for a while...

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Thank you so much for your advice. I do not have a microwave at this time or even a toaster oven, so I am reliant upon places like Whole Foods and Trader Joe's, or chicken take-out, which was fine until the Celiac hit. On second thought, maybe it wasn't fine, because right before it started, I was eating tons of untoasted whole-grain bread, such as spelt and whole wheat, sunflower, multi-grain bread, and tons of granola, and corn oatmeal bread from a local bakery. It seemed as if I could eat anything I wanted with no problem; in fact, I had a sauerkraut sandwich on whole wheat bread the night before I got sick. The only clue that something was wrong was that I'd come down with a bad case of hives, and had no idea why. The following morning, I had three oranges and a whole grapefruit for breakfast with some granola and chocolate and suddenly, my stomach blew up like a balloon, and I've been very sick ever since. It's been almost three months and I think I've become malnourished, because my legs are very swollen, and I'm very weak and pale, with circles under my eyes and wheezing.

I'd really appreciate any advice. I thought a bean burrito from Chipotle might be a good idea, or some yogurt, or Trader Joe's no gluten cereal, but I'll hold off. I don't eat red meat or drink soda, and I don't know what a high lectin food is. I stopped eating, hoping the bloating would go down, which it didn't, and I'd appreciate any advice about how to phase food back in, without cooking.

Thanks :)

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I do not necessarily agree with staying away from dairy, not unless you always did have problems with dairy. Some celiac's do have trouble with dairy, but not all. I did very well with dairy, as did my sister, and our dad--so staying away from dairy is not always true for all celiac's. It's a personal choice. Some do have problems, some do not.

http://www.krispin.com/lectin.html This is a good link to read about lectins, but it can also make you feel like you should stay away from nearly everything. Nightshades are heavy with lectins, legumes too, which is where your beans would fall.

As I mentioned, cottage cheese is high in protein, and that's why I did so well when I first went gluten free. I was getting my protein, along with fruits. Sometimes, I stirred peas into the cottage cheese, so I was getting protein and veggies. Sometimes I stirred tuna into the cottage cheese with the peas, which I used to do a long time ago while on Weight Watchers.

Rice is good too, it's very mild. Rice and chicken. My sister always ate yogurt for her breakfast, still does. She loves yogurt, I have to force myself to eat it, I have never liked yogurt, even though I know it's good for you to eat, I really do not like the taste of it. My favorite yogurt is Columbo's White Chocolate and Raspberry, and they do not sell that flavor here on Long Island! :(


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Do you happen to know how common wheezing, hives, and leg-swelling are, as symptoms?

Hi nikki,

I don't think wheezing and leg swelling are very common symptoms. The hives you mention could be caused from DH which some Celiacs get and it is a skin rash on your skin. If you have hives and wheezing and leg swelling I think you should see a Doctor to because you may be having an allergic reaction to the wheat products. Wheezing is not something to take lightly, not to scare you but it's something you want to get under control quickly so it doesn't get worse. You could have a wheat allergy and celiac disease. I think it's something you should see your Doctor about.

Wish you the best and hope you get it figured out soon.


Joni

Dx'd with Celiac Disease 8/01/07

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Two weeks ago, I tried probiotics, and I thought I was going to die that night, so I'm afraid to try anything new,

If you know you had a gluten-free brand, this could mean it is doing what it is supposed to do -- killing off the bad bacteria only while doing it it is making a toxic overload on your system. Can you reduce the dosage down greatly then gradually increase?


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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If I've been gluten-free for five days, and still have symptoms such as lower abdominal gas pain (but the pain is milder than it was previously), abdominal bloating, irregular bowel movements (but that's improved too), wheezing, coughing, and leg swelling -- does that mean I don't really have Celiac?

I still have circles under my eyes, and am pale, and get tired more easily than I like, but my energy has definitely improved. Besides the abdominal bloating and pain, the most disconcerting thing is that I often start to wheeze when I try to talk. My symptoms came on suddenly after eating lots and lots of whole-grain bread, in an effort to "improve" my diet.

I thought I'd feel much better than this after five days gluten-free (with the exception of Beano, which I stopped using two days ago when I learned on this forum it could be a problem).

How will I know when it's okay to start phasing back in fruits, vegetables, beans, and yogurt? Right now I'm living on chicken breasts and bananas, the mildest things I've found.

Any advice?

Thanks in advance.

As the other posters have said, it will take you a little while to feel completly well again. If you live in a gluten eating house-hold then you could be getting CC from things like shared toasters, butters makeup etc. Another thing to watch out for is hidden gluten, you'd be surprised what ive found it in, make sure you check things like sausages, burgers, soups and confetionary as well as make-up, shampoo, body lotions and basically anything that is going to come into contact with your body. Good luck, I hope you feel better soon


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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After I read your post, I checked my shampoo -- Nature's Gate chamomile -- and it has, among other things, barley malt and hydrolyzed wheat protein. Could that really make a difference? If so, could you recommend another brand that's gluten-free?

My toothpaste is Colgate, and the label doesn't reveal any gluten, soap is Neutrogena. I had hives tonight, and I've been trying to figure out why -- this all started with a bad case of hives, but I've used my toothpaste every day for years and years, so it doesn't seem to make sense, and I don't understand how I could be allergic to something I've used for so long.

But thanks for the warning. Would it be paranoid to avoid entering a bakery so I don't breath the wheat?

Thanks again :)

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After I read your post, I checked my shampoo -- Nature's Gate chamomile -- and it has, among other things, barley malt and hydrolyzed wheat protein. Could that really make a difference? If so, could you recommend another brand that's gluten-free?

My toothpaste is Colgate, and the label doesn't reveal any gluten, soap is Neutrogena. I had hives tonight, and I've been trying to figure out why -- this all started with a bad case of hives, but I've used my toothpaste every day for years and years, so it doesn't seem to make sense, and I don't understand how I could be allergic to something I've used for so long.

But thanks for the warning. Would it be paranoid to avoid entering a bakery so I don't breath the wheat?

Thanks again :)

Yes the shampoo can really make a difference if i were you id stop using it straight away. In my experience shop brands tend not to have gluten in them (but i live in the UK it could be different where you are).

I know it doesnt make sense.. it didnt to me.. but then again the human body rarely does. :lol:

Coeliac is oftern triggerd by a stressful event, bad virus and anything that puts the body through trauma.

i hope this is a help to you


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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After I read your post, I checked my shampoo -- Nature's Gate chamomile -- and it has, among other things, barley malt and hydrolyzed wheat protein. Could that really make a difference? If so, could you recommend another brand that's gluten-free?

My toothpaste is Colgate, and the label doesn't reveal any gluten, soap is Neutrogena. I had hives tonight, and I've been trying to figure out why -- this all started with a bad case of hives, but I've used my toothpaste every day for years and years, so it doesn't seem to make sense, and I don't understand how I could be allergic to something I've used for so long.

But thanks for the warning. Would it be paranoid to avoid entering a bakery so I don't breath the wheat?

Thanks again :)

Yes your shampoos and lotions and makeup can make a huge difference. Gluten in these products can keep the autoimmune process active.

I used to use Giovanni's line, they are really nice and gluten free but they do have soy which is a problem for me. Suave will clearly label gluten ingredients as will Dove. Garnier Nutritioneste has some that are gluten free also. You also want to avoid products that have oats, at least at first.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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After I read your post, I checked my shampoo -- Nature's Gate chamomile -- and it has, among other things, barley malt and hydrolyzed wheat protein. Could that really make a difference? If so, could you recommend another brand that's gluten-free?

My toothpaste is Colgate, and the label doesn't reveal any gluten, soap is Neutrogena. I had hives tonight, and I've been trying to figure out why -- this all started with a bad case of hives, but I've used my toothpaste every day for years and years, so it doesn't seem to make sense, and I don't understand how I could be allergic to something I've used for so long.

But thanks for the warning. Would it be paranoid to avoid entering a bakery so I don't breath the wheat?

Thanks again :)

Yes the shampoo can really make a difference if i were you id stop using it straight away. In my experience shop brands tend not to have gluten in them (but i live in the UK it could be different where you are).

I know it doesnt make sense.. it didnt to me.. but then again the human body rarely does. :lol:

Coeliac is oftern triggerd by a stressful event, bad virus and anything that puts the body through trauma.

i hope this is a help to you


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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