Still Not Diagnosed But Confused About Diet

[needtobebetter]

Hello,

Hope your all okay.

I still dont know whats wrong with me and still not convinced about a few things. Ive just come back from pituitary clinic as had no periods apart from one in a year and had low estrogen. My skin has lost elasticty and become thin and no moisture to it so they thought maybe I had a pituitry problem.. I ve got to see the doctor about my blood tests but reception said nothing marked as urgeunt so I'll see what he says.

I have been on and off diet and i am not doing it anymore I am just worried about vitamins due to the fruit.

I am also really down about my skin and wondered if it can be due to celiac or not enough silicon in diet as not eating wholegrains ??

Or i thought could celiac affect thyroid whilst your still eating it as ive had some tests where ive been off the diet and its been low thyroid.

Does any one else have multiple intolerances sunfloer seeds etc..

I also have eithe watsing or weakness on the right side my face, tricep and feels like half my bottom and my innder thigh. I am having trouble with my hips aswell I canmt lift my leg lateraly ....

My face looks droopyer when i am tiered so I am wondering about MG as thats linked with celiac ..

I dont know I am hoping this neurologist will be able to help me in london as its a Teaching hospital ..fingers crossed..

Ive noticed i have bad night sweats when i eat wrong aswell and patches of exzma

If anyone can help about the skin I am very down about the elasticty, ive never been fat biggest 9stone.

Thanks you for listening xxx

[Mom2Twins]

Just wondering why you are avoiding fruit? There is no gluten in fruit, you just need to avoid wheat, rye, barley, and oats (and ingredients made from them) in order to be gluten free. Let me know if I am misunderstanding you.

[mslee]

Do you have a diagnosis of celiac?

Lots of Celiacs to have other food intolerances and allergies can develop after taking gluten out of the diet. Sunflower does seem to bother me. Celiac can cause skin problems, joint pain, and neuro symptoms. It's good you are going to touch base with a neurologist. I did, they didn't find anything so I am hoping my symptoms were all from eating wheat my whole life & being deprived of vit & minerals.

You probably want to see a dietitian if you are concerned about not getting enough nutrients from your diet.

I went and had allergy testing done, just to give me some idea of what I was dealing with.

also had nutritional blood work ran.

Following suggestions on here I have found my thyroid to be an issue and that I need more b12 to help with the neuro issues.

Thyroid can cause dry thin skin, there may be some helpful info for you here

Open Original Shared Link

also read up in the other food intolerances section

good luck!

[ang1e0251]

I'm kind of lost too. My skin improved off gluten, acne, rashes, color. The thyroid problem jumps out for me. Hope they will test you more thoroughly for that.

[needtobebetter]

Hello thanks everyone..

I became sick 3 years ago with Distended belly, impaction/ chronich constipation, anxiety, thick rash like exzma base of spine. saw gastro apparently they did a blood test for celiac but I am not convinced. Said nothing wrong.

Advised to go and see homeopath and she said i had candida and to do the diet but she said i could eat ryvita and they made me feel ruff, so i stopped having them (contain gluten dont they). I did her diet for 8 months thinking i am getting better lost alot of weight and was mainly eating meat fish, veg and rice cakes and mineral and viatamins.

Then I went back to eating got ill and she said i have an underlying problem so i got sent of to have biopsy for celiac had to eat for 5 weeks . Only thing I can think of is I only ate a bowel of porrig and 4 slices of bread each day..maybe it wasnt enough after doingthe diet for so long/?!!

THen when it was negative i kept binging on chocolate etc was so depressed as so ill. Even when I went on the diet I had terrible fatigue, but maybe lacking in vitamins as i wasnt seeing the homeopath so stopped the supplements.

Then I had loads of drama with Dad leaving mum and fihgting etc..I tried a antidepressnat and I woke up early hours of the morning with like a panic attack my heart pounding, pressure headache and my face had dropped and my neck gon into spasum..I was cnstantly shaking for about two weeks, dioreah, lost about 1/2 stone was going straight through me.

I dont know what happened but I have weakness in my right face, bottom, neck spasm and tricep

My face gets worse when i am tiered i think.

So Since that happened I got so depressed about it all and now consious of my facial weakness aswell I nearly gave up!! I did have another 3 tests for celiac but I kept doing teh diet for a couple of days and then seeing my face and thinking whats the point and bingeing!!!

If i eat fruit I get very badly constipated. I d like to eat fruit as it would be so much easier to do the diet but I get sick of having an itchy ladies area and teh constipation.

Ive just been reading about biosil on here from someone else and it does say it stregthens collagen and sisicon is found in whole grains. I dont eat any!!!

Im so bored of eating rice the only one i like is basmatti so been eating that or I eat buckwheat pasta..I really miss bread but its packed with yeat..and sugar..

God I am so confused..

THanks everyone xxx

[ravenwoodglass]

I tried a antidepressnat and I woke up early hours of the morning with like a panic attack my heart pounding, pressure headache and my face had dropped and my neck gon into spasum..I was cnstantly shaking for about two weeks, dioreah, lost about 1/2 stone was going straight through me.

/quote]

Did you go to the hospital when this happened? If so what tests did they do and what did they say about it? Has the facial dropping continued since this happened? It sounds like you had a serious reaction to the drug occur and you need to mention to the doctor in detail ASAP if you weren't seen at the hospital that night. You may have had a stoke or a ministoke.

A lot of what you are describing is common with celiac and the blood tests are not always correct. The biopsies can also be a false negative if damage is patchy which is is more likely to be when you have been gluten-free and then do a challenge. The best test of all is how someone does on the diet, when it is followed strictly. I hope you get some answers and are feeling better soon.

[AliB]

Those who know me on here also know that I am an advocate of the Specific Carbohydrate diet and a firm believer that many of our problems are caused by rogue bacteria and gut dysbiosis.

Can I ask how old you are? I get the impression that you are quite young and to be having thin skin at your age is pretty rotten.

Interestingly I just did a little trawl on the internet and came up with a possible idea. Do you get enough fats in your diet? Apparently a shortage of essential fatty acids, especially GLA, EFA and ALA from Omega 3's can cause the skin to thin and can also lead to dermatitis type scaly lesions which could equate with your 'eczema'.

Certainly you may well be gluten intolerant and possibly even carbohydrate intolerant. As, according to your symptoms Candida or yeast-based bacteria is also an issue it may be useful for you to get yourself on to the Specific Carb diet (there is a thread on this section for it). I am sure a lot of reactions we get to certain foods are down to bacterial activity. Some bacteria respond to certain foods by chucking out toxic by-products and it is likely to be those that we react to. The SC Diet works by removing the carbs and sugar that feeds the little beggars!

As you appear to be in the UK, it might just be an idea to see if you can get hold of some fish oil capsules and Evening Primrose Oil (EPO) capsules. Just today I have bought a big pot of EPO's and a bottle of liquid Cod Liver Oil from Tesco's. Lidl also do Cod Liver Oil capsules for just over

[ShayFL]

Excellent Ali!! Yes, lack of fatty acids can def. age your skin. The trick is the ability to utilize them. Consider an enzyme supplement with lipase when you take the oils.

[needtobebetter]

Hello Thanks..xx

I am 32 years old. I do have problems with fat as well though in particular sunflower oil.

When it happened last year I was pretty delirious aswell i think and went into my mums room and said help my face is falling off!!! MY dad had just left her and she knew I was in a state and i think she thought i was sleep walking or something and went back to sleep.

I felt like i couldnt breath so I jumped in my car and drove to a&E I could hardly see properly and wheni got there they found out I drove and just said to go and see the doctor, dismissed me!!! They tried to give me a pain killer but I was worried and wouldnt have it due to celiac and what had just happened.

I had a mRI and didnt show a stroke?!! My face is still the same and my arm and leg. I ve noticed my face droops more when I am tiered. When I eat wrong my body feels like it holds about 7lbs of water!!! Then I come off the diet and deflate!!!

I am really struggling with sleeping I never feel like Ive slept and my mouth is chewed to bits in the morning..

I understand about candida and have thought praps its not celiac and I have something else wrong whichis upsetting my balance and causing candia..

The other things I wondered is circulation could this cause thin skin loss of elastcity praps Ive got a totally different disease. I keep getting very sharp pains going up my foot on the right side and do worry taht I have something like that aswell.

I'll get some evening primrose but I have before and I am even sensitive to that!!! Anything to do with flowers even chalomile tea makes my stomach swell ...

Thanks awfully..xxxx

[AliB]

You don't specify which foot the pains are in. Can you be any more specific about where the pains are and what the pain is like?

You can tell a lot from the feet through reflexology. I used to get pains and itching in my feet when my digestion was bad, in areas that pointed to the colon (I don't get that any more since being on the SCD).

If you Google 'reflexology chart' and see if you can pinpoint where the pain is, that can give you a pointer as to where a problem can be. The feet are great 'windows' to the body.

Just after going gluten-free I got a pain in my side - it immediately coincided with a throbbing pain in one of my feet. When I checked the chart it was to do with the liver. I had been taking some Milk Thistle tablets for liver support and I think, in conjunction with the diet, my liver had a bit of a clear-out. It was a bit sore for a while but the throbbing in my foot and the tenderness in my side gradually receded and within a couple days it was gone.

In general what do you eat? Sunflower oil can be highly processed. Are you ok with Olive oil? A difficulty processing fats can point to problems within the liver and gall-bladder. Do you get fatty, floaty or frothy stools? (sorry, bit personal but it all acts as a pointer!).

[chatycady]

My skin was dry, flacky and thin from malabsorbption of fat. I started eating lots more butter, olives, and all kinds of fresh meat with fat and went gluten free - my skin improved dramatically. Also, I had a lot of rashes, ichy patches that went away once I started B-12 shots. (I develped pernicious anemia). You probably need magnesium and other supplements. Sounds like you may not be absorbing much of anything right now.

Your gall bladder could be effected, plus liver. - I've had hepitites and found fresh fruits (apples, pear, peaches) helped me recover. Gluten can cause problems in every organ of the body!

[needtobebetter]

Thanks every one xxx

I have definatley got a problem with sunflower oil and all oils I think the malabsorbtion makes sense I am going to get some linseed but not sure if the same things will happen. I do get bad painin my right side of back after ive eaten fatty food even salmon makes me feel sick its too rich and fatty..I told the doctor and he did ultra sound of my gallbladder and it was okay!!!?? But ive been on and offteh diet since my face drooped as so depressed about it.

The other thing is My period stopped and my estrogen low for a year. Before i saw pituitary specialist I stuck to diet for over a week and got a period!! and my estrogen was normal!!!!

So If iam malabsorbing fats will it get better the more i stick to the diet??? Ive just ordered Biosil to see if it helps.

The pain in my foot is my right side teh same side as all the muscle weakness. Its liek a sudden shooting pain in between my toes (the middle two toes) badly hurts I even panickes i have DVT or something..

Iam going to ask to be reffered to a celiac specialist.

So if i keep eating lots of oilive oil, mackeral my skin should get better???

I also get these little patches of exzma different parts of my body, which look like DH..I just dont want to put myself through the testing having to eat it again..

Thank you your input has made me feel a bit better. I was suicidal yesturday as i kept being told its my hormones due to no periods possible hypopituitary and then its all normal, I was hoping on hormone replacement it would all get better. Iam so consious of my skin looks old and it feels very uncomfortable. but diet makes sense.

I am currently eating

low carbs

Rice, potatoe, chick peas, kidney beans, meat, fish, vegteables

I get thrush when i eat fruit so i dont eat it as the sugar affects me due to the candida should I just eat it anyway?? my stomach bloats..I cant eat most sauces, cant have dairy, not sure about soya..cant have chalomile tea!!!

Bread, coffee, pasta, cheese, processed foods , alchaol...fruit an sugars make me very constipated but wheat causes explosive number twos..

I am much better with no carbs at all just veggies and the I can go to the tolilet regular and my tummy goes very flat..i did it yesturday and my stools came out the shape of my intestines i went about 4 times looked like stuff that had been stuck there for ages....

xxxxx

[AliB]

The pain between your toes would equate with the face and any pain along the side of the foot would tie in with the arm and leg.

My gut feeling would be that bacterial activity is behind it somehow. You are right to avoid fruit - I have had a problem for years with Candida and find fruit hard to cope with although I have been having a little lately. Your diet is not bad but although you are trying to eat low-carb you are having fairly high carbohydrates and starches in the rice, potatoes, chickpeas and kidney beans.

Many of us with gluten intolerance cannot digest carbohydrates and starches and all they end up doing is feeding the pathogenic bacteria that are causing us problems. The only way to control them is to stop feeding them the foods they need in order to exist.

The Specific Carbohydrate Diet cuts out those carbohydrates and just features those contained mainly in vegetables and a little fruit later on as we get better. We will still get enough carbs - even protein foods contain some carbohydrate.

I do, and I think many of us react in similar ways to the same foods that you have problems with. Any gas or bloating is going to be down to fermentation - back to bacteria again. We can guarantee if we are gassy that we have given the bacteria something that has driven them into a wild feasting frenzy!

Try having a look at the 'Specific Carbohydrate Diet - picking up the thread again......' thread in this section, and you can get more information from the 'breaking the vicious cycle' and 'Pecanbread' websites. There are also some SCD recipe sites out there too.

For many of us the SCD is proving to be the only way of recovering our health and many are benefiting from following the diet.

[RiceGuy]

It seems clear that you should stick to a gluten-free diet, but more is needed to address malabsorption and candida.

It sounds to me like there are numerous nutrient deficiencies. If it were me, I'd begin supplementing with vitamin B12, magnesium, calcium, vitamin D3, a strong B-complex, and a good multi-vitamin+mineral formula.

To address the candida, I'd avoid all sugars, vinegars, yeasts, and fruits. Plus begin taking caprylic acid or other candida fighter.

If you are having nerve/muscle issues, it might be beneficial to avoid nightshades, which do contain nerve toxins.

The SCD may work for you, and if and when you want to begin eating whole grains, there are many nutritious gluten-free grains available. These include Kasha (roasted buckwheat), amaranth, millet, rice, teff, and wild rice (not related to rice). There are of course many different kinds of beans to choose from too, which may also be worth exploring once you are absorbing nutrients better. Nuts and seeds are also dense nutritional sources.

Thing is, to get the proper testing done by qualified doctors, or the misdiagnoses can lead you in all the wrong directions. It has and does happen to many of us. You probably need heavy supplementation of specific nutrients, and the right tests will help define what you need most.

I hope you get the right answers soon!

[needtobebetter]

Thanks im going to do the diet youve mentioned I am better with no carbs or even just pulses is a big differce but it is very boring. I need sauces and things to bring the food alive and cant have sugar etc and it gets so boring.

I also get bad herpes infections when i eat tomatoes just to add to the problems. I just am a different person when i stick to the diet mentaly and physicaly.

I'll get the supplements next time i am out Ive ordered the biosil today.

Jopefully the neurologist will be able to work out from my muscles whats going on maybe i have a different autoimmune which is causing candida, ive been told they all do. My uncle has Rheumatoid Arheritis and he has candida. he cant eat fats, sugar and he looks like a skeltinton but feels better on the diet!!!!

Thanks

Mandxx

[nora-n]

That face thing youep mentioning, are you aware of that being wuite typical for neuro-lyme? Here in Europe it is called neuroborreliosis. They keep mentioning that paralysis of a face nerve is typical for that.

nora

[RiceGuy]

Thanks im going to do the diet youve mentioned I am better with no carbs or even just pulses is a big differce but it is very boring. I need sauces and things to bring the food alive and cant have sugar etc and it gets so boring.

You can make sauces without loading them with carbs or sugars. For instance red lentils cook into a nice puree, which can help make a tasty sauce. Various beans and veggies can be pureed in a blender or food processor. For non-carb thickeners, there's guar gum, xanthan gum, and agar agar, to name a few. Each work differently, thus choosing the right one for the job is important.

In place of sugar, I use Stevia. The pure powder is the best IMO. This is very potent stuff, and can take some trial and error to find the right amount to use in a given food.

Also, don't forget spices, which can make all the difference between food that is boring and food that is tasty.

[noucha]

The pain between your toes would equate with the face and any pain along the side of the foot would tie in with the arm and leg.

My gut feeling would be that bacterial activity is behind it somehow. You are right to avoid fruit - I have had a problem for years with Candida and find fruit hard to cope with although I have been having a little lately. Your diet is not bad but although you are trying to eat low-carb you are having fairly high carbohydrates and starches in the rice, potatoes, chickpeas and kidney beans.

Many of us with gluten intolerance cannot digest carbohydrates and starches and all they end up doing is feeding the pathogenic bacteria that are causing us problems. The only way to control them is to stop feeding them the foods they need in order to exist.

The Specific Carbohydrate Diet cuts out those carbohydrates and just features those contained mainly in vegetables and a little fruit later on as we get better. We will still get enough carbs - even protein foods contain some carbohydrate.

I do, and I think many of us react in similar ways to the same foods that you have problems with. Any gas or bloating is going to be down to fermentation - back to bacteria again. We can guarantee if we are gassy that we have given the bacteria something that has driven them into a wild feasting frenzy!

Try having a look at the 'Specific Carbohydrate Diet - picking up the thread again......' thread in this section, and you can get more information from the 'breaking the vicious cycle' and 'Pecanbread' websites. There are also some SCD recipe sites out there too.

For many of us the SCD is proving to be the only way of recovering our health and many are benefiting from following the diet.

Ive read your quotes about the specific carbohydrate diet and was wondering where i would be able to get more information on it or if you could help me out? i have done something similar in the past and it has been the only time in the past few years that i have felt healthy and myself again! would appreciate any help i could get thanks x

[Rachel--24]

That face thing youep mentioning, are you aware of that being wuite typical for neuro-lyme? Here in Europe it is called neuroborreliosis. They keep mentioning that paralysis of a face nerve is typical for that.

nora

Yes.....this is a very common symptom of chronic Lyme.

Needtobebetter,

Is the drooping only on one side of your face or both?

Bells's Palsy is a symptom of Lyme.....and typically there is drooping on one side of the face and usually the eyes are affected (drooping/sagging eyelid).

Early on, when I first got sick my face seemed kind of "lopsided" at times. This was noticeable but sometimes it would get better and other times you could see it if I pointed it out. I remember showing the Dr.....and he agreed but said "I'm not impressed..I've seen much worse".

Also there was alot of muscle pain in my face, jaw, nack and shoulders. It was excruciating at times....and my face felt numb on one side. I requested to be tested for Myasthenia Gravis which can cause muscle weakness in the face....that test came back negative.

I did have some drooping of my eyelids and this was in the very beginning when I had no idea what was going on. I was telling people that my "eyebrows were falling".

I had to laugh a little when you mentioned that "your face is falling" because I can totally relate to what you're saying! I was pretty freaked out by the whole thing when it started but everyone else thought I was totally insane. I was also feeling like my skin was losing its elasticity all of a sudden...it just didnt seem firm and it felt loose and strectchy.

The doctor sent me to physical therapy because my jaw was so stiff (TMJ) and the muscles were swollen. It felt good when the PT massaged it but it didnt resolve the problem.

What did improve the situation was totally cleaning up my diet and reducing my exposure to chemicals in food as well as my diet. I eat mostly organic. I quit smoking. Definately no alcohol. Then I realized I was sensitive to certain naturally occuring food chemicals and I then eliminated those as much as possible.

In my case the "drooping" totally resolved when I did that and it hasnt come back....its been maybe 4 years now.

I get a ton of fluid retention from exposure to chemicals and foods that my body cant process or is intolerant to. I also get alot of inflammation. It seems like the combination of fluid and swelling (from inflammation) was causing my face to droop a little.

Some days there would be so much fluid and swelling that my face would seem bloated or just more "full"....and then as the fluid and swelling went down....there would be some "sagging".

I still get some of this because my body doesnt detox very well and its impossible to avoid chemicals 100%. A strong perfume can cause some swelling and fluid that is exactly the same as it was in the beginning. Its just that now I am not overloading my body with these things that cause reaction....so it just doesnt get to the point where my face is visibly lopsided or that I'm in alot of pain.

So the reactions are still causing fluid and swelling.....its just to a much lesser degree because I'm avoiding alot of the "triggers".

For me it was on both sides of my face but my left side was more affected....hence the "lopsidedness".

I still get teased every once in awhile for complaining that my "eyebrows were falling".

I just didnt know any other way to explain what I was experiencing......my skin really was sagging because of the fluid.

[AliB]

Ive read your quotes about the specific carbohydrate diet and was wondering where i would be able to get more information on it or if you could help me out? i have done something similar in the past and it has been the only time in the past few years that i have felt healthy and myself again! would appreciate any help i could get thanks x

Hi Noucha. There is a thread on this section on the Specific Carbohydrate Diet - it stretches to 28 pages or so but is well worth a trawl through if you have the time. All of us who post on it are following it and we all jolly each other along!

For more in-depth info if you search for the 'Breaking the vicious cycle' and 'Pecanbread' websites you will gain a lot more information. There are also some SCD recipe sites too.

It works by cutting out the foods that feed the rogue bacteria enabling our guts to heal. The only couple times I ever felt well was when I did low-carb - now I am kicking myself I didn't stick to it, but hey, we live and learn and sometimes we learn the hard way!

If you want to ask anything on the SCD thread please feel free.