• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
1desperateladysaved

How Do You Decide?

Rate this topic

Recommended Posts

Some foods have controversy about whether a celiac can have them or not. Not many of us have their own labs. I surely don't want to test a food that will do harm. Even experts have conflicting views.

My current thought is this. I am just beginning the healing process at 5 months grain free and 7 months gluten free. I feel I need to be absolutely stringent now. I do not eat many natural foods that bother others. Those I hear of that others have problems with I might eat especially if it is a food that I have not overconsumed. I hope to one day be able to put some things back in. At that point symptom hopefully will be undeniably clear when something amiss is put in. I feel it is alot easier and safer to be really restrictive in the beginning when you can not tell what is going on.

How are others making decisions like this?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


...You eat anything you want, unless youhave a problem with it, then you stop eating it.

You can't base your food choices on someone else's reactions - we're all too different.

  • Upvote 1

Share this post


Link to post
Share on other sites

What other foods are you eliminating? Did you remove all grains because they were obviously causing problems for you?

If it is a food that you know is causing you problems, remove it for six months then re-introduce it - wait at least three days to see if you have any reaction to it - if no reaction add it back into your diet. If you have a reaction, remove it and re-trial it at six month intervals.

Never remove a food or group of foods because someone else has had a reaction. Many people heal quite nicely by just removing gluten.

  • Upvote 1

Share this post


Link to post
Share on other sites

I agree with Jess and Lisa.

I think common sense helps. Know what is and isn't likely to have gluten in it. And remember everything isn't about gluten.

For example- Common sense would tell you that an orange doesn't have gluten. If you eat an orange and have an upset stomach, its not gluten. Its something about the orange or lousy timing and you got a stomach virus.

Share this post


Link to post
Share on other sites

PS...when you trial foods, make sure it is the whole food. For instance trial with fresh or frozen corn - not corn chips or corn tortillas or slices of tomato rather than spaghetti sauce or salsa.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


What other foods are you eliminating? Did you remove all grains because they were obviously causing problems for you?

If it is a food that you know is causing you problems, remove it for six months then re-introduce it - wait at least three days to see if you have any reaction to it - if no reaction add it back into your diet. If you have a reaction, remove it and re-trial it at six month intervals.

Never remove a food or group of foods because someone else has had a reaction. Many people heal quite nicely by just removing gluten.

I second this. I still can have corn, soy and nightshades. They are in fact in my safe foods list, and I've seen some people intolerant to them here... If I were to eliminate them because other people reacted, I would be damned.

Of course I can become intolerant to them later, but not now, so let's enjoy B)

Share this post


Link to post
Share on other sites

Then there are the lucky ones like me. I can eat ANYTHING except gluten. No other intolerances. If I listened to what bothered others, my diet would be much different.

Share this post


Link to post
Share on other sites


Ads by Google:


I understand that everyone reacts differently. That is part of the reason that I asked this question. I can be more concise with my answer. I have not removed anything that I had not been suspicious of for a long time, or had a reaction to. Upon removal, I got confirmations by reacting to the smell. I also had withdrawl symptoms or symptoms of my body cleaning out. I am having higher highs than ever, so it seems like I am on the right track. I have not run out of foods to eat, and think I am eating a bigger variety than ever. My diet plan has been supported by my MD. I am also under discussion about it with a chiro trained in nutrition.

I am coming from a standpoint of desperation. I must heal. My body is acting super sensitive. I have had 30 years of damage, nearly died 5 years back, and I know I have quite a few intolerances I am experienced at finding them having found several over the last 20 years. Extreme caution does seem advisable. My body is now able to really tell me what it doesn't like. I am looking forward to a time when I will be able to try to introduce some food back. But that is me and my standpoint, which I present so you know where I am coming from.

I asked how you decide. jetsgar said that he/she decides by eating it and sees if they react. That is the kind of answer that I am looking for. Other ideas may be I read what helps others. I read what trained professionals have to say about it. Karen G says she uses her common sense.

My question is:

How do you decide if you should eat it especially when there is disagreement?

Share this post


Link to post
Share on other sites

My question is:

How do you decide if you should eat it especially when there is disagreement?

We thought we answered that. I guess we don't know what you are asking?

I see no diagreement here or in the reputable Celiac medical community - don't eat wheat, rye, barley and sometimes even gluten-free oats (usually recommended that you wait until you get feeling better). Often, it is recommended you limit or eliminate dairy for a few weeks or months but that isn't because it has gluten. That is because the part of your intestines that are damaged by Celiac is the part that digests dairy.

Share this post


Link to post
Share on other sites

If you are seeing improvement - I'd say you have found what you need to be eating. If you remain to improve or even have periods where nothing changes I see no reason to remove further foods. Should you get worse then it would be time to look for more food intolerance. If you find a food that bloats you, causes pain, makes you foggy or simply turns you off - don't eat it.

I absolutely know how frustrating it is to want to heal from decades of undiagnosed Celiac Disease. It took 43 years to destroy my digestive system. At three and half years although I have had several periods of improvement and one eight month period of excellent health (healthier than ever in my life), I have had many more months of frustration that my digestive system is not healing which caused serious flares and backslides.

Several folks on this board told me to have patience during my first year - that it can take up to five years to heal serious damage - at seven months gluten-free I could not believe that everything I was doing was not enough and I was not only not improving - my pain and fatigue had gotten worse.

So now I'll tell you what you have likely already been told and will likely be told again. Healing the small intestine from total villous atrophy takes time. I hope it will not take years in your case, but it may.

I decided to remove every possible high lectin and common food intolerance when I was getting much more ill gluten-free. Should you find you are getting worse - look for other foods. If you are improving - even slowly - keep doing what you are doing.

Hang in there :)

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


And I would add, if you are not improving/getting worse and feel you do need to remove something, start with the most likely culprits. For many of us these are the most common allergens - soy, corn, eggs (usually the yolk), peanuts, tree nuts, fish, shellfish. Don't do them all at once - try one at a time.

  • Upvote 1

Share this post


Link to post
Share on other sites

I keep getting really good ideas of what I should do. That is nice. I was really wondering how YOU do it. How do you decide what you should eat?

I think I have gotten some answers now. Thanks

Share this post


Link to post
Share on other sites

Hi D-Lady,

I am more of the 5 year recovery plan type myself. I had periods of feeling better and feeling worse. Notice I am using past tense Yahoo! :) I have quite a few intolerances, most of them developed after going gluten-free. I pretty much stick with the minimum 6 months for a retrial of a problem food, if I am really interested in eating that food again. But it is kind of hard to tell what foods are going to be a long term problem while your gut is irritated. Since April I gave up all forms of grapes and my gut has improved a whole lot. I can now eat beans, which I had stopped several years ago. One thing to keep in mind also, is your gut bacteria may need to adjust to re-introduced foods. If they haven't had any beams to eat for several years, they won't be adjusted to eating beans. So the first time may be rough. But if they do adjust after a few times then all is good. If the beans (or other food) were actually a problem, you would continue to have digestive symptoms and that would mean you need to stop that food. I've been able to reintroduce some foods lately that were off limits for years. But others are still problems. So it can vary and the only way to know is to try it.

  • Upvote 1

Share this post


Link to post
Share on other sites

I keep getting really good ideas of what I should do. That is nice. I was really wondering how YOU do it. How do you decide what you should eat?

I think I have gotten some answers now. Thanks

I thought we had answered your question - I'll take one more shot - this is exactly what I did:

First 6 months post Celiac Dx: Removed all gluten - had a few accidental glutenings and setbacks but had general digestive improvement - all other symptoms got worse.

6 months to 2 years post Dx: Kept detailed food log, tried removing foods I thought be bothering me/impeding healing. Some minor improvements but generally continued to get worse and could not pinpoint any particular food or food group intolerance.

2.25 to 3 years post Dx: Removed ALL high lectin food groups along with other foods that are likely allergens/intolerances plus those that I had already identified as irritating me. Dairy, Grains, Legumes, Nightshades, Eggs, Nuts, Seeds, Citrus were removed, eating only meat, fish, vegies (non-nightshade) and selected fruit for one month. Then I trialed each food (not food group) one at a time with at least three day between to monitor for reactions. Whether or not I had reaction to the food I removed them and returned to my base foods so that every trial had an identical start point. This process took over four months. I failed nearly every food I had trialed - often with very surprising symptoms. The few foods I had no reaction to I added back into my diet. From the very start of this elimination diet I was healthier and had more energy than any period in my life to date - until those 8 months I had no idea how it felt to feel great and was surprised to find out how ill I actually had been. It is amazing what a body will compensate for.

3 years post Dx: Had a major flare/flu type setback that got worse over a period of a month until I was at my sickest all over again. Docs had no explanation. Even my digestive symptoms came back. I was bloating, constipated and had all my fibromyalgia symptoms back again - wasn't vertical at all for a few months and was extremely foggy mentally. Endo revealed my villi were still completely atrophied, was treated for SIBO to see if it helped - very minimal improvement there. I removed the foods that had passed my trial: rice, potato, cheese, butter with no improvement. I ended up eating all broth/soups until I was able to eat my safe foods again. I have been eating meat, fish, vegies and fruit for about two months now and am finally slowly improving: have a clear head, pain and fatigue is improving, constipation is very infrequent. The last three days I have been starving and had much more energy so I am very hopeful that I am on the mend once again.

I still have no idea what caused my severe backslide in March - I had extreme health for eight months - thought I had found the solution to my complex digestive puzzle, than WHAM, sent back to starting point. What I do know is if I continue to improve I will not be trialing the foods I lost for at least another year.

Today, this week I am improving again - I remain ever hopeful that I'll continue to improve and regain full health.

  • Upvote 1

Share this post


Link to post
Share on other sites

I thought we had answered your question - I'll take one more shot - this is exactly what I did:

First 6 months post Celiac Dx: Removed all gluten - had a few accidental glutenings and setbacks but had general digestive improvement - all other symptoms got worse.

6 months to 2 years post Dx: Kept detailed food log, tried removing foods I thought be bothering me/impeding healing. Some minor improvements but generally continued to get worse and could not pinpoint any particular food or food group intolerance.

2.25 to 3 years post Dx: Removed ALL high lectin food groups along with other foods that are likely allergens/intolerances plus those that I had already identified as irritating me. Dairy, Grains, Legumes, Nightshades, Eggs, Nuts, Seeds, Citrus were removed, eating only meat, fish, vegies (non-nightshade) and selected fruit for one month. Then I trialed each food (not food group) one at a time with at least three day between to monitor for reactions. Whether or not I had reaction to the food I removed them and returned to my base foods so that every trial had an identical start point. This process took over four months. I failed nearly every food I had trialed - often with very surprising symptoms. The few foods I had no reaction to I added back into my diet. From the very start of this elimination diet I was healthier and had more energy than any period in my life to date - until those 8 months I had no idea how it felt to feel great and was surprised to find out how ill I actually had been. It is amazing what a body will compensate for.

3 years post Dx: Had a major flare/flu type setback that got worse over a period of a month until I was at my sickest all over again. Docs had no explanation. Even my digestive symptoms came back. I was bloating, constipated and had all my fibromyalgia symptoms back again - wasn't vertical at all for a few months and was extremely foggy mentally. Endo revealed my villi were still completely atrophied, was treated for SIBO to see if it helped - very minimal improvement there. I removed the foods that had passed my trial: rice, potato, cheese, butter with no improvement. I ended up eating all broth/soups until I was able to eat my safe foods again. I have been eating meat, fish, vegies and fruit for about two months now and am finally slowly improving: have a clear head, pain and fatigue is improving, constipation is very infrequent. The last three days I have been starving and had much more energy so I am very hopeful that I am on the mend once again.

I still have no idea what caused my severe backslide in March - I had extreme health for eight months - thought I had found the solution to my complex digestive puzzle, than WHAM, sent back to starting point. What I do know is if I continue to improve I will not be trialing the foods I lost for at least another year.

Today, this week I am improving again - I remain ever hopeful that I'll continue to improve and regain full health.

Yes, that is an answer to the question! That is how gotta ski decides what to eat. Are there any other ways?

Share this post


Link to post
Share on other sites


Ads by Google:


My way is kind of unsafe to do. Since I am fairly tolerant to gluten (and I have been improving recently, 6 slices of gluteny cake and my stomach only yawned for half of a day), I just eat things without much control. Sometimes I feel something is not right soon, sometimes I will only realize when I am full-blown glutened and the damage is done.

I don't think this is a safe method for Celiacs or people too sensitive... I have non-celiac gluten intolerance and even so, it is really mild because I didn't take long to figure it out.

Share this post


Link to post
Share on other sites

The way I did it, not necessarily recommended, was not at all methodical, and the sequence is set out in my signature block.

I had GI problems (cramping and pain) as a child from breakfast cereals (wheat), but outgrew them as a teenager (and also stopped eating cereals, albeit unconsciously, after leaving home.) Up until 1969 I had pretty much a cast iron stomach and had a friend who commented she loved to go out to eat with me because I could eat ANYTHING.

In 1969 I started working with a group who ate a lot of Mexican food, my first introduction to it -- I know, I lived a sheltered life -- and began having digestive troubles. I tried to avoid Mexican restaurants but hubs loved Mexican food. I didn't give any thought to food intolerances.

I had to quit caffeine in 1973 because I had spent too much time working second jobs in espresso bars and sampling too much of the owner's product -- sensitization! :P Racing heart and insomnia, and I mean big time!!!.

Gradually over the years I began having more and more digestive issues, not just Mexican food. Hard to pinpoint what it was.

In approx. 1990 I worked across the street from a frozen yogurt place and often mid-afternoon someone would go across the street and get some. I was always running for the bathroom about half an hour after eating it. One of my workmates was lactose intolerant and she diagnosed me. Eliminated milk, ice cream, frozen yogurt, cream. Other dairy didn't bother me.

During the 90's discovered that I always felt bad when I ate pasta so slowly dropped that from my diet. Could still eat a whole baguette of french bread with no problem, or so I thought.

During the 90's started having episodes of extreme bloating and gas, especially after eating things like corn chips, potato chips, popcorn, all the party snack-type things. Bloating was so bad I would faint. Bit embarrassing really.. :o Finally began to suspect food, but was sit corn, wheat, potatoes.....???

Life continued on, with the fainting (slow learner here) until I developed rheumatoid arthritis, ultimately diagnosed as psoriatic arthritis. Rheumatologist knew nothing about celiac or autoimmune diseases. I knew someone with ankylosing spondylitis (autoimmune rheumatoid disease) who had dropped gluten from his diet to treat his AS. I decided to give it a trial for my PsA. Was amazed when my GI symptoms improved but not my arthritis.

However, after dropping gluten, I developed lots of rashes, itches, hives and discovered I was sensitive to soy (and corn, of course -- still fainted from that one -- so dropped both of those. Then my bloating problem transitioned into a manifestation of atrial fibrillation (both that and the fainting coming from the vagus nerve) and it was being precipitated by something else I was eating. I knew that nightshades were bad for arthritis, and discovered that baked potatoes gave me hives. Dropped potatoes, had problems with tomatoes so dropped all nightshades. Next food to lose was legumes. When I had rid my pantry of gluten I had found lots of beans, lentils, split peas, but for some subconscious reason I was not really using them. I had stopped eating refried beans. Then I started having reactions to green beans and green peas, so there went the legumes.

Without zingy tomato sauces and salsas my taste buds cried out for stimulation and I apparently overdid lemon and lime juice - those were the last foods I have had to drop because I was breaking out in hives again.

Like GottaSki, discovered lectins and realized that all the foods I did not tolerate were high in lectins. Luckily I seem to tolerate dairy lectins okay. I can also now tolerate potato starch, corn starch, and of course lactose. I believe the reason I tolerate the starches is because they are highly refined, and the lectins are contained in the outer coverings of the plants as a protective layer for the plant against birds and insects - hence baked potatoes and any corn where the whole kernel is ground into the product are things I cannot eat.

So that's what happens when you are a slow learner and in denial. :rolleyes:

Share this post


Link to post
Share on other sites

Listening to others doesn't work well for me. I react to lots of things which others don't and sometimes I don't react when others say that they do.

If I am experiencing symptoms, I eliminate one food at a time for a week and see if I feel any better. Then I reintroduce it to see if I get better or worse. I read all I can to help me to decide what to eliminate first, as I want to get better as soon as possible. This is a tedious, slow process, but it is worth it in terms of gains in health which have been remarkable.

If I am not experiencing symptoms, I add one food at a time and don't add anything else new for a week. I start with a small amount so that if I do get a reaction from that, I don't give myself a bad reaction. I gradually increase the amount I try over the week. Again, I read all I can and ask lots of questions to decide what to try.

I hope that helps. I am in the super sensitive category.

  • Upvote 1

Share this post


Link to post
Share on other sites

The way I did it, not necessarily recommended, was not at all methodical, and the sequence is set out in my signature block.

I had GI problems (cramping and pain) as a child from breakfast cereals (wheat), but outgrew them as a teenager (and also stopped eating cereals, albeit unconsciously, after leaving home.) Up until 1969 I had pretty much a cast iron stomach and had a friend who commented she loved to go out to eat with me because I could eat ANYTHING.

In 1969 I started working with a group who ate a lot of Mexican food, my first introduction to it -- I know, I lived a sheltered life -- and began having digestive troubles. I tried to avoid Mexican restaurants but hubs loved Mexican food. I didn't give any thought to food intolerances.

I had to quit caffeine in 1973 because I had spent too much time working second jobs in espresso bars and sampling too much of the owner's product -- sensitization! :P Racing heart and insomnia, and I mean big time!!!.

Gradually over the years I began having more and more digestive issues, not just Mexican food. Hard to pinpoint what it was.

In approx. 1990 I worked across the street from a frozen yogurt place and often mid-afternoon someone would go across the street and get some. I was always running for the bathroom about half an hour after eating it. One of my workmates was lactose intolerant and she diagnosed me. Eliminated milk, ice cream, frozen yogurt, cream. Other dairy didn't bother me.

During the 90's discovered that I always felt bad when I ate pasta so slowly dropped that from my diet. Could still eat a whole baguette of french bread with no problem, or so I thought.

During the 90's started having episodes of extreme bloating and gas, especially after eating things like corn chips, potato chips, popcorn, all the party snack-type things. Bloating was so bad I would faint. Bit embarrassing really.. :o Finally began to suspect food, but was sit corn, wheat, potatoes.....???

Life continued on, with the fainting (slow learner here) until I developed rheumatoid arthritis, ultimately diagnosed as psoriatic arthritis. Rheumatologist knew nothing about celiac or autoimmune diseases. I knew someone with ankylosing spondylitis (autoimmune rheumatoid disease) who had dropped gluten from his diet to treat his AS. I decided to give it a trial for my PsA. Was amazed when my GI symptoms improved but not my arthritis.

However, after dropping gluten, I developed lots of rashes, itches, hives and discovered I was sensitive to soy (and corn, of course -- still fainted from that one -- so dropped both of those. Then my bloating problem transitioned into a manifestation of atrial fibrillation (both that and the fainting coming from the vagus nerve) and it was being precipitated by something else I was eating. I knew that nightshades were bad for arthritis, and discovered that baked potatoes gave me hives. Dropped potatoes, had problems with tomatoes so dropped all nightshades. Next food to lose was legumes. When I had rid my pantry of gluten I had found lots of beans, lentils, split peas, but for some subconscious reason I was not really using them. I had stopped eating refried beans. Then I started having reactions to green beans and green peas, so there went the legumes.

Without zingy tomato sauces and salsas my taste buds cried out for stimulation and I apparently overdid lemon and lime juice - those were the last foods I have had to drop because I was breaking out in hives again.

Like GottaSki, discovered lectins and realized that all the foods I did not tolerate were high in lectins. Luckily I seem to tolerate dairy lectins okay. I can also now tolerate potato starch, corn starch, and of course lactose. I believe the reason I tolerate the starches is because they are highly refined, and the lectins are contained in the outer coverings of the plants as a protective layer for the plant against birds and insects - hence baked potatoes and any corn where the whole kernel is ground into the product are things I cannot eat.

So that's what happens when you are a slow learner and in denial. :rolleyes:

That sounds sort of where I have been the last 20 or so years. Finding out by unstructured means. I have occassionaly forgot that I had problems with certain things only to figure it out the next time.

Diana

Share this post


Link to post
Share on other sites

My way is kind of unsafe to do. Since I am fairly tolerant to gluten (and I have been improving recently, 6 slices of gluteny cake and my stomach only yawned for half of a day), I just eat things without much control. Sometimes I feel something is not right soon, sometimes I will only realize when I am full-blown glutened and the damage is done.

I don't think this is a safe method for Celiacs or people too sensitive... I have non-celiac gluten intolerance and even so, it is really mild because I didn't take long to figure it out.

I just remembered that when I used to bake delicious homemade wheat bread that I would bloat. My belly looked really big, but it caused no pain. It is just cosmetic, though.

Share this post


Link to post
Share on other sites


Ads by Google:


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
      108,432
    • Total Posts
      941,232
  • Member Statistics

    • Total Members
      66,360
    • Most Online
      3,093

    Newest Member
    Jen1104
    Joined
  • Popular Now

  • Topics

  • Posts

    • Turkey, vacuum pack it, you can use it later for soups, stews, sandwiches, omelettes etc. Will keep for months in the freezer

      Dressing,
      You can use it in various ways my fun thing to do with it is moisten it back up a bit and load it into a waffle maker these can then be frozen or eaten when ever, dressing and sausage flavored waffles are AWESOME.
      Other leftovers can be put in a icecube tray and froze these cubes can be kept in a bag in the freezer, they are perfect for just putting a few in a bowl and zapping in the microwave later for quick meal, I love stir frying them in with eggs.

      Gravy, Gravy can be frozen in icecube trays, and kept in bags, you can then put these over bread, mash, etc and melt them over them later in the microwave or use in a soup like a stock to add flavor.

      Most Desserts can be frozen but around here I have hardly ever had any last the next week.

      Mashed potatoes, again these can be loaded into icecube trays frozen and kept in bags for quick reheat and use meals. Goes great in soups later to thicken them up. Green beans, after thanksgiving....you might want a new flavor thankfully the green beans can be incorporated into another cuisines using spices, in a soup or stir fried Asian style in coconut secret teriyaki sauces.
      Casserole dishes honestly freeze quite well in may cases, I have not had many survive the next week but often you can top them other other cuisine spices or sauces and fry them up in a skillet or reheat in a bowl for something different.  
    • Appreciate the thorough responses.    The stomach issues have been dreadful the past few weeks and brought hurrendous awakenings.the worst I have slept in a long time. I have had a few gluten foods in all honest. Maybe a mcdonalds twice in 2 months. Which isnt ideal. But I dont seem to feel anything afterwards (terrible excuse I know)  My biggest worries were my memory and cognitive behaviour! I was in London Bridge station and forgot where I was heading for 15 minutes. My memory is terrible, as is the concentration. So its a bit of a battle at the minute and I am flunking in my new job. I feel like as you said, neurologically I have deteriorated. Wit and brain function out the window. Considering I was a pretty switched on person. Balance and diziness at points. (all this on a gluten free diet after 4 months triggered me too my mcdonalds binge) ha ha.  I think the memory was the worst.    As you said about the brit medical side being useless. I think you are correct. I understand its the NHS and free etc. But this is just not considered a worry. Ive considered pulling myself into A and E this past few weeks because of the pain and I know this is the only way anyone will give me a thorough look over. I was also sent for a bone scan ( no reasoning as to why) But from research it seems to be for searching the nutrients in the bone?    Neurological side has been really i think what has been the toughest. My job requires an awful lot of high concentration and memory. Which when I fail at, causes stress, and then I am caught in the vicious cycle! Thanks for the help guys. Nice to meet some fellow people who can relate. I just feel like celiacs seem to know more then the doctors, which shows primitive practice in order to solve it. Once again, I would never know the NHS or doctors. I understand free health care is health care. But how low on the list this is, is a worry.    
    • I get vomiting with large amounts of gluten, and motion control loss, followed by either Diarrhea or constipation for a week was back in June 2016 when I decided to eat at a new place, I was on my floor unable to move vomiting so hard there was blood in it.
      NOW trace amounts I have gotten sense then and confirmed via Nima Gluten sensor then following lab testing have show that for me I get constipation, gas, bloat, and nerve issues with fog and peripherally neuropathy. The vomiting was missing from stuff confirmed at 6ppm, but obvious other nerve and fog issues were apparent (I kept dropping stuff and walking into things, mind kept on wondering and having those what was I doing moments, topped with backed up to hell with painful gas)
      Everyone is a little different and symptoms seem to change and evolve with time and type/form of exposure. I used to get a angry Mr, Hyde rage mode, and weeks of constipation and I used to not have the motor loss issues just brain fog and looping thoughts. It changes

      The cause is mostly due to your antibodies going up and your immune system attacking your own body, where it attacks, how, and to what degree greatly varies and after a exposure it can take weeks to wind down off the response and for the antibodies to go down. Just giving a basic idea here.

      Once you get exposed all you can do is treat the symptoms and wait it out, up supplementation of b vitamins, magnesium etc. Take pepto, or Imodium depending on what you have, teas and bone broths and try to eat easy to digest foods for the next week, Mushed up, blended, purreed, stewed/steamed super soft foods.
    • Hi everyone,  Once again I am here looking for your help. I was diagnosed with Celiac less than a year ago. It took quite a while to find out because I didn't experience any particular symptoms after eating gluten. I was always tired, had memory problems and was frequently ill; sometimes I had gastrointestinal issues, but they came and went.  Last night I went out for dinner, to a Thai place I trust(ed). Later, I could hardly sleep, I had horrible nightmares, those where you can hardly tell apart when you are awake or not. I expected to have high fever but nothing!  Today all my body aches, I am very tired and was nauseated all day. A little bit gasy and bloated as well.. Was I glutened?? Did I already clean my body enough that I now start to react in this fashion? If so, why does that happen?  There is also gastroenteritis going around, that would be the alternative explanation. I thought I excaped it. I also didn't vomit or have diahrrea like the rest.  What do you think?
    • With a positive EMA and a positive tTg, that is a slam dunk for Celiac Disease.  If you read about testing results, the odds are 99% that you have it. You also had very high numbers on your testing so that adds to the diagnosis.  At this point, the biopsy, if you have it done, is to check for the amount of damage, and is not needed for a diagnosis. I declined the biopsy as I was very sick at diagnosis.  The doctor who ran my blood panel said there was no doubt I had it due to the high numbers on my blood work.  I have been gluten-free for 12 years and every single doctor I have ever seen since then, who whined about me not having the biopsy, shut up about it once they saw my initial blood work.  The difference in my health since going gluten free was nothing short of amazing. I am sure you will have the same results, once you go gluten free.
  • Upcoming Events