Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Thoughts?
0

12 posts in this topic

I had a lot of health problems last year. Someone suggested gluten could be an issue so I started going gluten-free in the spring. I was diagnosed last summer and I went completely gluten-free. I also was told i had casein intolerance so i went of dairy. I was also told to avoid soy and corn. At times, I limited nightshades and grains. I noticed some improvements - skin cleared up, not constipated any more, warts went away, memory improved, brain fog lessened, better sleep, and mood stabilized. I wanted to feel better like I used to a few years ago when I had really stable mood, little to no brain fog, great concentration, good memory, energetic.

Since April, I have been feeling worse and I do not understand why. I have diarrhea, cannot digest food, and bad stomachaches. I am always tired, cannot remember, warts came back, memory has gotten worse, i have brain fog, am distracted, have poor concentration, and am irritable. I am in more pain - headaches, back, shoulder blades, feet, etc. I just do not feel like myself and my quality of life stinks. I also think I must have malnutrition again given the GI issues. I eat good strict gluten-free diet no cheating and it is not an issue of CC. I do not think it is another common food problem - soy, nightshades, corn, other grains, etc. Typical diet - fruit (depends on season - peaches, nectarine, banana, grape, pear, berries, melon, etc), veggies (yellow summer squash, zucchini, green beans, kidney beans, lima beans, pinto beans, peas, asparagus, cucumber, celery, etc), meat (chicken, ground turkey, limited beef, lamb on occasion, no pork), nuts (mostly almonds, peanuts only on occasion), oil (extra virgin olive oil), himilaya sea salt. Supplements - digestive enzymes, serenaid. I have tried general vitamin supplements and ones that are supposed to help with GI healing, but they did not seem to make a difference or i felt worse. I do not think it is an issue of stress.

Any body have a similar situation? Any ideas as to what I can do to feel better?

Thanks for your any help, insights, or input you might have.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Have you gone back to your doctor with these issues?? Sounds like someone has done a good job finding different food sensitivites, etc. Maybe there is more to be done? Have you had something like H Pylori checked?

1

Share this post


Link to post
Share on other sites

I know that doctors aren't always helpful, but if you haven't seen yours with these returning symptoms, you should. These are some serious symptoms that might not even be related to what you're eating.

richard

1

Share this post


Link to post
Share on other sites

Well, a lot of the fruits and veggies you are eating may be CC'd with corn. Bananas are gassed with ethylene gas to make them ripen. (They are also grown with so much pesticide that I would never eat one again, even if I could!) Bagged salads, bagged baby carrots, and some other veggies are washed in a corn based "citrus" wash. Frozen fruits and veggies are often dusted with cornstarch to keep them from clumping together. I just found out that even the ICE you find covering veggies in the grocery store may have corn starch in it. Supposedly it keeps it from melting so quickly.

The new packaging can be a big problem for corn allergies too. I just got corned last week from drinking WATER out of one of those "crystal clear" plastic bottles. They have replaced the BPA's with a corn derived substitute. That is now starting to show up in the lining in cans too, so as of now, I will not eat ANYTHING that comes out of a can.

Also any vitamins or supplements you take may (and probably do) contain corn or wheat. I had to completely stop all of my vitamins, and am just hoping I can get enough nutrition on my very limited diet.

0

Share this post


Link to post
Share on other sites




the doctor checked for h pylori and parasites. they were negative. we did a couple anti-parasite programs any way. i also did an anti-candida program.

had not heard about all the cc issues with corn. it is not labeled real well. probably because it is not a "major allergen."

i wish i could find a good doctor. my experience has been they do not listen, they think i am crazy/ hypocondriac, they do not know how to help me, and/or they do not work with me. yeah i have been thinking i need to see a doctor. i am just sick of the crap i usually get. i also cannot afford to take time of work or go to an out of network doctor. hmm.

i had seen something about the salicylates before. i think i looked at it a little. i should probably look at it some more.

thanks for the replies and information. i so love this site/ forum!

0

Share this post


Link to post
Share on other sites

Why are you taking SerenAid? I would drop the supplements. It could be giving you bad side effects.

Also check your personal hygiene products- shampoo, lotions, etc. Anything that gets on your hands can get in your mouth.

0

Share this post


Link to post
Share on other sites

the doctor checked for h pylori and parasites. they were negative. we did a couple anti-parasite programs any way. i also did an anti-candida program.

had not heard about all the cc issues with corn. it is not labeled real well. probably because it is not a "major allergen."

i wish i could find a good doctor. my experience has been they do not listen, they think i am crazy/ hypocondriac, they do not know how to help me, and/or they do not work with me. yeah i have been thinking i need to see a doctor. i am just sick of the crap i usually get. i also cannot afford to take time of work or go to an out of network doctor. hmm.

i had seen something about the salicylates before. i think i looked at it a little. i should probably look at it some more.

thanks for the replies and information. i so love this site/ forum!

If I were waiting on advise from my doc, I would still be sick, seriously. Sounds to me like something is creeping into your diet still either thru CC with something.....kitchen, food items you're not aware of OR it is something new. One thought is high fructose. For me it gives me the same symptoms as gluten. Also, check out a high salicylate food list.

Are you supplementing? Eventhough you have been doing better your body still could be vitamin and mineral deficient.

0

Share this post


Link to post
Share on other sites

Could even be additional auto-immune disease(s). If you do get to a doctor, ask about testing for AIs. This can get incredibly frustrating and expensive though, because AIs are difficult to pin down.

0

Share this post


Link to post
Share on other sites

Any body have a similar situation? Any ideas as to what I can do to feel better?

Thanks for your any help, insights, or input you might have.

I had a similar situation with my daughter, my son, and myself, yeah. I know a few here who have as well, to different extents. For some of us, after we have been gluten free for a while, we become more sensitive to gluten. I headed straight to super-sensitivity. My son ended up with a lot of gluten-free foods that were safe at first, but a few from the list now make him sick. My daughter started getting sick from all her normal gluten-free foods except one. She seems more sensitive to cc from products that have changed things in the production line and to gluten cc from other sources, now.

Foods that we have reacted to that would be in your diet:

nuts and beans - At about 6-8 months gluten-free, my daughter started having problems with unflavored nuts and dried beans that were processed with wheat, while she was fine with these processed without wheat. The first time, we both reacted to the same nuts (we have different symptoms of glutening) - it's actually what helped us realize gluten might be an issue with our nuts, and started looking at other dried goods, too. Sadly, the 'processed with wheat' label is voluntary, not mandatory, so finding safe nuts involves a lot of calls.

Veggies and fruits - a weird question: does your grocery store allow free cookies to kids while their moms are shopping? Ours does this and in the store, I've seen the kids eating their cookies and touching fruits and veggies in the store at the same time. So theoretically, there could be some gluten cc issues with those if not washed with soap and water thoroughly.

Meat - One that got us was raw bison meat. I'd been eating it just fine, and then the company started using the same grinder for both their sausage (with gluten in it) and their plain raw meat. After that, I was sick on it, although it took quite a while to figure that one out!

Oil - This happened to us with our Spectrum oil, where wheat germ oil was processed on the same line. I had lots of different oils from them, and was only using one bottle of one type at first. But when I got a new bottle, or tried to use the other oils, I was getting sick all the time, because I would use the oil every day. Also another one that took a while to track down!

salt - is your salt made by a company that also makes any spice/flavoring mixtures, especially any with gluten, that might be processed or packaged in the same facility? It's rare, but when I was calling around for salt, I did come across this. In the early days, though, so I wasn't recording down the information like I should and don't recall the company anymore. <_<

supplements - my daughter has had a terrible time finding supplements that didn't make her sick. We haven't tried digestive enzymes because I'm a bit nervous about it, for the same reason. Might be worthwhile to check on those to see if they test for gluten levels with every batch, possibly? If they don't, it might be possible for gluten cc to sneak through a batch here or there and causing issue.

Also, some of the labeled gluten-free or naturally gluten-free food (in the USA) aren't tested, and may be contaminated, as well. This study is a great example of this being an issue: Contamination of naturally gluten-free grains and flours

From what you listed in your diet, however, it didn't sound like you use any grains, is that right?

And one last thing. For me, with gastro issues, I developed a few food intolerances/allergies along the way. All I get from some of them are gastro problems, and some I get gastro and spacy-headed kind of stuff. I had to space things out and do a food journal to track 'em down.

Sorry I can't be of more help. Just figured if you've been tested for some of the usual suspects in a situation like this, you might want to check out some of the more unusual ones. :-)

0

Share this post


Link to post
Share on other sites

A lot of the fruits (peaches, pears, etc.) you are eating are high in sorbitol. I have read that a high percentage of the general population (and even higher percentage of celiac population) are intolerant of sorbitol. Tree nuts (ie. almonds) are also something to keep an eye on. Just some food for thought as you track your diet and symptoms.

0

Share this post


Link to post
Share on other sites

I would definitely ask for more testing and see a nutritionist who specialises in food allergies. Something sounds like it is triggering your system into overdrive.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined