• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

1 Year Since My Trip To Er
0

8 posts in this topic

A year ago today I was laying in a hospital bed, very sick and docs had no clue what my problem was. What I can say it has been one heck of a journey! For those struggling now struggling for answers and wondering if celiac could really be the culprit, you are not alone. I don't know why it is so hard to diagnose but I can tell you it will do a HUGE amount of damage to your body.

I have been gluten-free now for 10 months.....it was a 2 steps fwd, one step back process for a long time but once I got it figured out I found the diet much easier than I ever thought it would be.

Still fighting some issues as this just went nuts and was attacking every inch of my body, it seems. It been like chasing a fire inside of my body. Once I get the flames out in one part of the body it goes some place else but the good thing is these issues are finally being addressed. I have gotten to know my docs better in the this last year than ever before. I wonder when they see me is they are thinking, 'Oh no, here comes the nut-case, hypochondriac!'

My stomach was a real mess when all this started, spent 5 months on Nexium, Pepto, and low acidic diet to get some healing started. I am still on a low acidic diet trying to regain some bone growth that I had lost. At this point I only take antacids if I have a glass of wine or something with spice, and I can tolerate a little of both now.

The dizziness which I had every day, all day for 9 months, left as soon as I was able to keep gluten out of my diet for 4 weeks which was amazing! My high blood calcium went from hyper to boderline hypo in a matter of weeks off gluten. As soon as I got my vits lined-out with the diet my flinches/spasms, vision issues, crawling feeling on the skin, headaches, stiff neck and back, high blood pressure and heart palpitations all went away!! My mental clarity has improved tramendously, my speach which seemed almost a stutter at times has improved. Recently I have been successful in being able to cut back on my vits without any of the symptoms like burning in my feet, coming back!!

The gluten-free diet has made a huge difference in my life. It has not been a speedy process but well worth the dedication it takes!

0

Share this post


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


Congratulations on your first anniversary! May your health continue to improve on all levels. Stories like this gives us 'newbies' hope.

1

Share this post


Link to post
Share on other sites

Congratulations AVR. I know you have struggled. So good to hear you can tolerate eating some spices now too! And that many of your neuro problems are subsiding, amongst others. Its not ended, but sounds like you are definitely on the path towards excellent health!

Bea

1

Share this post


Link to post
Share on other sites

Congratulations AVR. I know you have struggled. So good to hear you can tolerate eating some spices now too! And that many of your neuro problems are subsiding, amongst others. Its not ended, but sounds like you are definitely on the path towards excellent health!

Bea

Thank you Bea, you have been a great help to me! I do hope one day everything will settle down!

0

Share this post


Link to post
Share on other sites

Thank you Bea, you have been a great help to me! I do hope one day everything will settle down!

Does it ever settle down? And why all the issues? I got my canker sores to go away using 1000 mg L-lysine daily. Then I had problems with my foot and was diagnosed with planter's faciitis. I have any appt w/derm for my burning scalp which I have tried all kinds of products for. Doc is wanting to put me on meds for Raynaud's syndrome which I may finally relent to. And the issues I have been fighting with my kidneys lately was an infection so I am now on two anibiotics to try and fight this. It's exhausting!

Bea, I read in another reply you mentioned something about high blood sugar and why celiacs have this problem at times. I would be interested in more info on this. I had problems with high blood sugar with my last child. Lately I have been having that same naseated stomach feeling, light headed at time. I have been tested for diabetes at least 2 times in the last year and results are negative but I wonder if there is something going on. I have 2 symptoms left yet that docs don't have an answer for.....my blurred vision (my other vision issues went away with cod liver oil) and the buzzing in my ears. I have wondered if they all could be related to my blood sugar.

Dear AVR,

I just got a copy of Sharla Race's Salicylate Handbook. I think just maybe your days of being salicylate sensitive may still be here, just showing itself a little differently perhaps? Sharla Race has a website at www.foodcanmakeyouill.co.uk

I too had plantar fascitis. How I got rid of it was stop using the salicylate treatment on my foot which made me much worse plus I used thin sliced garlic I taped to the affected area of my foot. It was like a miracle--it just went away. Try it--it may or may not work for you. But I am thinking it will likely help. If you are salicylate sensitive the usual salicylate treatments will just backfire.

I would also strongly consider looking into homeopathics for helping out your kidneys.

Alternatively, if you find you can tolerate it, try using dandelion root to help out your liver and kidneys. It is healing for both and generally regarded as being gentle--and whereas it does have salicylates it is only at a low/moderate level. It helps you urinate more while putting the potassium back in. It often can be tolerated at least for a while if you have salicylate sensitivity.

Other similar remedies are nettles and uva ursi. The last of which I have used off and on for years. Uva ursi creates an environment not conducive for the microbes to stick in the urinary tract. I found it to be quite effective, whereas drinking cranberry juice was not. Now I have learned cranberries are very high in salicylates. Whether uva ursi is high in salicylates or not I don't know. I am hoping there is a homeopathic equivalent for either that or cleavers, both of which are excellent against bladder and kidney disorders. If not, I am betting some homeopath could make it.

The nettles meanwhile are sometimes considered an antidote for salicylate sensitivity. They are good for the liver as well as a good diuretic for the kidneys. I have experimented with them a bit, but can't say for sure. They haven't seemed to harm me in any case. If my kidneys were acting up I might consider using them more. Again I think there is a homeopathic equivalent. When I have looked it up sufficiently I will pass the info on to you.

Again, overall it may still be important for you to avoid the salicylates. The spices might not be giving you hives or whatever symptoms they gave you before, however they may be affecting your liver and kidneys. I could be wrong, but I think its worth investigating. It is listed as one of the problems one can get from salicylate sensitivity. There are also related sensitivities for some people connected with it like oxylates for instance and BHA and BHT, tartrazine, NSAIDS etc.

High salicylates are in many cleaners and body lotions, as well as shampoos and fragrances. Coconut and its derivatives are hard to avoid, however it is possible. I make sure there are no scents in anything I use. Your burning scalp could be caused by something like this. Taking the epsom salt baths and soaking my head in it for at least part of the time really helps. I also now always wash my hair first in the sink--like my mother and grandmother always did. Now I finally have figured out why--the less soap or detergent the better.

Looking at various products as well as food and chemical lists as well as participating in the forum at http://salicylatesensitivity.com just might help you.

Before you decide to try out the various other treatments, consider taking Nattokinase capsules. It is derived from the Japanese dish Natto, fermented soybeans. The samurai discovered the healing properties of Natto over 1000 years ago, given all their battle scars etc. It does not contain salicylates. It has a well researched track record of reducing inflammation, clearing platelate aggregation, and clearing scar tissue. It is very good for the blood vessels and heart.

There are no negative side effects that I have read about unless you take too much and/or you are a bleeder, which it sounds like you are not. If you take natto cakes however make sure they don't have wheat in them. It seems the Japanese now often put wheat in the Natto as a binder. I also hear it is quite smelly and thus an acquired taste. I am considering sending off for the bacillus however and try making my own, just to see. It is much cheaper to make than to buy the nattokinase--though if you order nattokinase online you can get it for about half off the shelf price.

I would also consider taking co-enzyme B vitamin complex (best taken on an empty stomach--I take mine with the nattokinase actually) since its likely you may be having difficulty absorbing B vitamins due to damaged villi, which could add to your problems with your circulation and heart issues--it did for me at any rate. My heart rattled around after any stress, physical or emotional. After two weeks of these co-enzyme B's the rattling went away. I get mine from Country Life.

And yes, when I stop and think about it, my fingers and toes used to turn white and then blue from the cold--and then itchy red afterwards. Since I was a little kid in fact. They don't do that any more thanks to the nattokinase and the co-enzyme B's plus staying off the salicylates and wheat family gluten. I nevertheless still try to make a practice of dressing warmly. Nearly daily walks, or doing modified push ups and sit ups etc., I am certain also help.

I take silica drops which helps my joints be strong enough to do the push ups and sit ups and light hand weights. That and my other minerals of course, like liquid trace minerals, magnesium, zinc and even MSM since I need the sulpher. The sulphation pathway is often messed up for those who have salicylate sensitivity.

I also have to take E-zorb for my calcium since other forms of calicium are still not absorbable enough for me. I go off my various minerals once in a while to see if I still need them. And although I can do it for a little longer than I used to, it appears I still do need them or I get joint problems and weak fingernails etc. all over again.

Of course my case of mineral malabsorption is worse than many. I believe the reason is due to extreme damage to the villi in my intestines due to the effects of rampant salicylate sensitivity coupled with untreated gluten sensitivity for a great deal of my life.

The damaged villi can also create problems with the blood sugar, like what you were noting. For me its more problems with hypoglycemia. Thus for a whole variety of reasons, doing things to create a better intestinal environment for the villi is imperative for me, and I bet it may be the case for many here who have celiac, and certainly for those who have both celiac or severe gluten sensitivity and salicylate sensitivity.

The damaged villi then also set up a stressful situation for the nerves since fat absorption is the first thing that is affected due to the blunted villi. Then the undigested fat along with undigested proteins and carbs. go into the blood stream where it is recognized by the body as being foreign invaders. This then causes an inflammatory response. It also in turn tends to clog up the liver, which turns the fats into cholesterol balls which then clog up the gall bladder (as "gall stones"), which then becomes too clogged do its job of releasing bile.

Fortunately I have discovered eating azuki beans helps dissolve the excess cholesterol and thus the liver and gall stones. Yay!! Plus its far more digestible than other beans. And like other beans however it is excellent for modulating the blood sugar, creating a calming effect too.

I thus am not eating heavy animal fats any more since my gall bladder and liver were under it this last fall. I can now eat chicken--without the fat or ski, though I make a practice of not eating it every day. However I mostly avoid eggs except in the occasional baked rice bread. And at this point I won't touch either pork or beef. I eat some fish and beans as well as the yogurt instead.

So yes, I am experimenting with making and eating home made whey infused sauerkraut and home made yogurt (from which I get the whey by the way) as well as gluten free miso. So far so good. Actually the results have been excellent so far, as well as very tasty.

Not everyone who has salicylate sensitivity can tolerate these kinds of amines, however I seem to be able to as long as the lacto bacilli induces the process. Nevertheless, I do not tolerate cheese or aged meat.

Thus far I have not tolerated kefir, however I am willing to give it a try again one of these days. My understanding now is that sometimes one's gut has to slowly heal and transition to be able to handle these various good bacteria.

I cross my fingers. And also hope some of this is of some help to you. And that I haven't confused you too awfully from too much material. However from my point of view it is all very much inter-related.

Bea

1

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks Bea for your response. I did try the dandelion tea as you had suggested before and it made my stomach feel sick. I tried it several times to make sure and it did the same every time. I tried Milk Thistle and did not find a difference in the way I felt. I read about the nettles when you suggested them before but what scared me in my reading was that they are a diuretic for the kidneys and I have to keep my kidneys hydrated because of the existing lodged stones but perhaps I can see what would happen. I'll stop the cranberry tabs, maybe they are doing more harm than good.

Thanks on the tip for the garlic for the faciitis, I will give that a try. Let me ask you a weird question, if you don't mind. I have always been an active person....hiking, biking, jogging, etc. I have continued to walk on my tredmill but took my dogs for a 1 hour walk ovr a week ago....something that used to be common and frequent but had done so in awhile. The next day I could hardly stand. My hip joints and low back were killing me. This past weekend we went to a social and after 2 hours my feet were hurting, felt numb up past my ankle, we had to leave. Next day I was in pain. I drove this weekend, 30 minutes in the car and my left foot fell asleep. My hands have been going numb while I sleep. Could this all be due to cutting back on my B complex?

I will try the epsom salt soak on my scalp. I have tried everything else it seems and nothing has made the difference. I will also tighten up on my salicylates and see if that makes a difference. I have been avoiding them but allowing an orange every other day, maybe my system just can't take it.

Thank you for the advise. I really do appreciate it.

0

Share this post


Link to post
Share on other sites

Thanks Bea for your response. I did try the dandelion tea as you had suggested before and it made my stomach feel sick. I tried it several times to make sure and it did the same every time. I tried Milk Thistle and did not find a difference in the way I felt. I read about the nettles when you suggested them before but what scared me in my reading was that they are a diuretic for the kidneys and I have to keep my kidneys hydrated because of the existing lodged stones but perhaps I can see what would happen. I'll stop the cranberry tabs, maybe they are doing more harm than good.

Thanks on the tip for the garlic for the faciitis, I will give that a try. Let me ask you a weird question, if you don't mind. I have always been an active person....hiking, biking, jogging, etc. I have continued to walk on my tredmill but took my dogs for a 1 hour walk ovr a week ago....something that used to be common and frequent but had done so in awhile. The next day I could hardly stand. My hip joints and low back were killing me. This past weekend we went to a social and after 2 hours my feet were hurting, felt numb up past my ankle, we had to leave. Next day I was in pain. I drove this weekend, 30 minutes in the car and my left foot fell asleep. My hands have been going numb while I sleep. Could this all be due to cutting back on my B complex?

I will try the epsom salt soak on my scalp. I have tried everything else it seems and nothing has made the difference. I will also tighten up on my salicylates and see if that makes a difference. I have been avoiding them but allowing an orange every other day, maybe my system just can't take it.

Thank you for the advise. I really do appreciate it.

Hi Caroline,

You remind me of me so very much. I know it must be frightening going through all this. It was for me. However you will get passed it. You will get passed all of this. There are answers out there. Just be prepared to have to be alert for signals and be willing to follow up hunches. Going off the oranges is likely imperative. They are very high in salicylates. And can be quite hard on afflicted kidneys.

So yes the lack of sufficient B complex could be negatively impacting your joints. It is possible. Whether they are affecting your joints or not, you probably still need them given everything. The co-enzyme ones are the best since they will not overload your already overworked liver.

Even more likely though you are low on minerals. If you can't take regular ones due to your kidney stone situation, consider taking the homeopathic cell salts.

It is also possible you are eating/ingesting something that is causing you a problem.

Given your situation I would metaphorically run to see a good homeopath. However given your past difficulties with alternative practitioners I can understand your hesitation. It is however the logical thing to do since your system is so very sensitive to other things. In Germany they have some very good practitioners. There is likely to be someone there who can help you. Meanwhile you can start educating yourself concerning the subject and perhaps even get some homeopathics that could help your kidneys as I suggested elsewhere.

Meanwhile I would also invest in some good acupressure books and administer myself and/or have hubby or ?? someone help on the afflicted points. Heat helps too.

When I am really under it and hurting I take a teaspoon of baking soda in a glass of water, chased by more water. Meanwhile day to day the MSM and the epsom salt baths really seems to help. I also take some magnesium citrate daily, though as I have more epsom salt baths, I often have to back off on the amount of magnesium I take by mouth.

And yes, if you aren't doing it already, take hot epsom salt baths. The days you don't want to do that, give your feet a good soak in epsom salts and water. Start slow on the amount of epsom salts however. You might react initially if you are salicylate sensitive. Reason being your body unloads a lot at once which can be too much. So some just start with a couple of tablespoons in a bath, and then gradually work their way up. I started with two small handfuls--after having a reaction to using a cup of epsom salts. I had nausea etc. I now do 8 handfuls of epsom salts--but have been doing this for some time now. As said I didn't start with that.

Your skin conditions meanwhile indicate to me that your liver is under it. Thus staying off the medium and high sals for now is probably a good idea. Also staying off heavy animal fat may be important. Actually, its probably not the best thing for you to be eating a lot of animal protein either right now given your kidney distress when I stop and think about it. Fish is better--though check this out and see if you are ready for it or not. The azuki beans (adzuki or whatever) could really help you. Mung bean sprouts might also be a good idea. Maybe home made low fat (or no fat) yogurt too?? Think outside of the box is my best advice. Last time my kidneys were all inflamed and had a bad infection I lived on home made plain yogurt and salad. Now I would use iceburg lettuce for the lettuce part. And no cukes due to their high sals content. Now I would probably blend parsley, celery and iceburg lettuce together for smoothies. Barring the parsley if it is too high in oxylates for you, I would probably use the mung bean sprouts.

Meanwhile keep me posted. I am glad to help. Your situation mirrors mine in many ways. I am in fact thinking of starting a blog about health, including the combined effects of salicylate and gluten sensitivity. Its highly doubtful we are the only ones affected like this.

Bea

1

Share this post


Link to post
Share on other sites

Bea thanks! I sent you a private reply. I do think it is time to find a homeopathic nurse as I am bewildered and docs don't seem to have the answers. I am so much better than before but I have to figure out what is causing the continued issues. I will try what you have suggested.

Annette

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
      106,785
    • Total Posts
      932,410
  • Member Statistics

    • Total Members
      64,265
    • Most Online
      3,093

    Newest Member
    Craig Hennessy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Matt,  Your post has literally changed my attitude over my morning coffee today In a matter of minutes.  You have done a wonderful job summing up the experience of not only myself, and you as well, but my guess is probably a lot of people who come to this board.   I know from having some email conversations with researchers that even those in the gluten Community do not see eye-to-eye on all of this. So we certainly do have a long way to go.  As for the three months you're absolutely right, as I had already tried a strict diet for 2 or 3 months and still had a lot of symptoms. I think the doctor just wants to meet after 3 months to see if there's any Improvement, the test. But I'll give it a good 6 to 12 as you suggest.  There is that lingering fear that nothing will get better and I'll continue to go undiagnosed with something sinister.  it is hard not to think that way in my case. however, again, your post is giving me some hope. And even if that hope is not realistic at the very least it's a distraction for a little while which I need.  And hey, it may just be the answer!  I am often on the fence about whether or not I should be bitching about my doctors.  in reality, two of the things in life I would never want to be would be a doctor or a landlord.  people really do look to doctors as if they are God.  a friend of mine is a physician and told me that it's quite frustrating for doctors when they can't figure out what's wrong with the patient and they get burnt out.  so I have a lot of respect for the Physicians who keep trying to find what's wrong and do so while being polite and courteous to the patient even though they may inside be feeling frustrated. I have absolutely no respect for the ones who  fail to notice that there are recalls out on their models of the God complex.
    • I'm currently searching for a brand of rice that is safe for even the most sensitive. I saw posts on here from around 2009 (I believe) and was just curious what everyone ate without issues lately?       
    • I'm not really sure what you mean? 
    • Hello and welcome I'd just echo CyclingLady - do you need to put yourself through this? There are lots of good reasons for pursuing a diagnosis but amongst the strongest are helping you to 'keep honest' on the diet or ensuring that your not denying yourselves a lot of foods for good reason. Neither of these apply to you and so I'd have to ask what you have to gain by putting yourself through it?  Oh and: Me too, but every so often I fall of the wagon into a gluten free cheesecake or similar Best of luck!
    • My own bugbear is that in dismissing the fad diet journalists will typically reference Celiac but will often say that only Celiac patients should be following the gluten free diet. Whatever the consensus medical opinion of NCGS, it's a fact that there are many people who are not diagnosed Celiac but who have been advised by their doctors to follow a gluten free diet. That distinction is typically too subtle for such articles and they therefore help to support the idea amongst the wider populace that if you're not celiac you can eat gluten and if you're avoiding it your either deluded, a chronic attention seeker or jumping on a bandwagon. A reductive and potentially harmful generalisation. 
  • Upcoming Events