Gluten-free-01

4 hours ago, Posterboy said:

but I found when I addressed my Vitamin(s) deficiencies my condition (nerve inflammation) got better and why I love Vitamin(s).  It is the natural way for us to manage stress which leads to inflammation . . . thus disease in time.

Posterboy, I’m currently interested in vitamin and mineral deficiencies and their impact on proper nerve function. So, if you don’t mind me asking: which vitamins or minerals helped you with the nerve inflammation?

You mentioned B12 and magnesium – is there anything else you found useful? Also, it would be great if you could say how exactly you were taking these vitamins or minerals, i.e. the dose, the time of the day, for how many weeks/months..

The reason I’m asking is that I don’t know much about supplements and how to use them properly - so that I don’t overdose or combine them in the wrong way, for instance. (I haven't had any blood tests to check for deficiencies.)  

E.g. I’m taking a very strong B-complex* now, there are 100 tablets, and I don’t know for how long I can use it safely.. 100 days in a row wouldn't be a good idea, right?

Thank you.

*B3 50mg, B5 25mg, B1 15mg, B2 15mg, B6 10mg, B7 500 micrograms.

4 hours ago, Posterboy said:

the way I see it (my own opinion) if after taking a vitamin/mineral the condition that remains (if it remains) is the true disease.

Exactly, I agree.

5 hours ago, Awol cast iron stomach said:

I wish you luck since the reactive ingredient is not transparent. Keep watch as others suggested to suss out the culprit.

Thank you, Awol cast iron stomach. It's really hard to tell which ingredient(s) is the wrong one for me. I think I'll eliminate all additives as much as possible because they are unhealthy anyway and then if that doesn't work I'll eliminate corn and dairy, too.

Thank you everyone for your replies.

ravenwoodglass: Your advice was helpful  I’ll try to avoid items like this which have so many unnecessary and artificial ingredients – they make me feel out of control. A food and symptom diary is a great idea - especially when trying out new brands of foods.

artistsl: Thanks for the tip – I don’t live in the US/UK unfortunately so I won’t be able to purchase this specific brand of kefir. However, I agree that it’s a good idea to try and find another brand which isn’t full of additives. It won’t be a problem.. I’m NCGS as well and I’m very familiar with brain fog and dizziness.. very unpleasant. As for the locust bean gum, I’ll definitely try to avoid it. I don’t think I have an issue with dairy but know that many celiacs/ncgs people do so it’s a good suggestion.

cyclinglady: No, I don’t have an intolerance to corn in general.. but maybe I do have some kind of intolerance to the glucose fructose syrup.. it’s a very artificial and processed ingredient and this is not the first time I’ve found myself reacting in a bad way to an item that includes it.

Jmg: Yes, the unflavoured ones would be safer, I think. I’m almost sure my reaction wasn’t to dairy as such but to one (or more) of the additives. The reason is that I’ve been eating lots of dairy products since I went off gluten and have been ok. The pattern is this (I guess): if it’s a normal dairy product such as a yogurt made of milk/cream + yogurt cultures (+ fruit + sugar), it’s ok. And unflavoured milk and all kinds of ‘real’ cheese are fine, too: mozzarella, cheddar, cottage cheese etc. Once a yogurt/kefir or another milk product includes additives or unnatural ingredients, there seems to be a problem.

You’re right - there are other possible sources of cc.. I try to think about them one by one because it really gets very confusing when there are many possible sources of a glutening/cc.. it’s almost like an investigation. It’s a very good point though, thanks    

Feeneyja: Thanks for the suggestion. As I said, for now I’ll probably assume I’m not dairy intolerant but will definitely be wary of it and bear it in mind because many of you guys have pointed it out.  

Hi guys, I had a really bad reaction to a certain brand of kefir yesterday. The reaction was neurological and I think it must have been an accidental glutening or an allergic reaction to an additive. The problem is I don’t know which ingredient had caused it. I was wondering if anyone has experienced a negative reaction to any of the following ingredients:   

Locust bean gum E410

Apricot puree (further unspecified)

Glucose fructose syrup

Citric acid E330

Sodium citrate E331

Paprika extract E160c

I haven't listed the rest of the ingredients because they seem to be ok: e.g. milk, sugar. 

Thanks

50 minutes ago, Juca said:

1 year?! Did the hairloss start immediately? Because for me it only started a few months later.

Did your endocrinologist recommend any steps to facilitate the process?

In my case the hair loss started about a month after I went off the pill and lasted for about half a year. But I also had a lot of stress at the time so maybe this could be another reason for the hair loss. In general, the withdrawal effects can really last for a year or so.. e.g. irregular periods.

I wouldn’t say that the process can be facilitated.. the body was kind of ‘addicted’ to the drug and it takes time for your body to find its balance again.

The good thing is that it will be ok, in the end.. your body will adjust.. don’t worry too much about it  If you’re like me the hair will grow back and the other withdrawal effects will also disappear.

I’d also suggest that you get your thyroid checked – hair loss can be a symptom of hypothyroidism, for instance.       

I had been on birth control for many years and then the side effects of going off it were scary. I lost a lot of hair, my hair was greasy, I had acne, my periods were irregular, I had panic attacks, heart palpitations and tachycardia. My endocrinologist told me the withdrawal effects can last for a year or even more.

I also met a paramedic at the time and we were talking about it and he said that honestly birth control is **** and everyone should avoid it. He had seen many women or young girls with complications caused by the pill – specifically pulmonary embolism and thrombosis.

So, I think your issues may be caused by stopping the pill.   

13 minutes ago, Jmg said:

G'day Matt (couldn't resist it).

9 hours ago, Mat82 said:

I would like to get tested, so i know whats going on, and it would be good to have a doctor that can help me and suport me. 

So the best thing for me to do would be to eat gluten, then go to the doctor and ask for a celiac/ncgs test?

Matt has given good advice. I'd like to add one more thing: some celiacs are seronegative so the blood tests are not 'perfect'. I tested negative for celiac but didn't have an endoscopy/biopsy so I can be either a ncgs or a seronegative celiac. The important thing is my symptoms have improved so much on the gluten free diet that this is a proof that I do have a problem with gluten and have to avoid it.

6 hours ago, Mat82 said:

Has anyone else been through this, Does anyone have any thoughts on what is going on, any solutions etc?

Any help would be appreciated, as i cant go back to the way i felt, especially when i know how good i can feel

What do you typically eat in a day? I’m wondering if nutritional deficiencies could be the problem..

As for the anxiety/depression/brain fog/lack of energy - these issues can be confusing because they can be either symptoms of health conditions or withdrawal/detox side effects. For example, brain fog was a gluten intolerance symptom for me and then after I went gluten free, it was a gluten withdrawal symptom. I think the same applies to quitting caffeine, sugar, etc. How strict was the detox program?

2 hours ago, ckeyser88 said:

i actually did quit for a month or so because only sometimes would smoke make my stomach upset. i have celiacs and been through the whole thing buddy ive been gluten-free for 4 months. why else would i be on this website i am anemic and take iron too. and I actually dont let it control me i find this advice kind of annoying TBH. 

Sometimes I find the discussions on this forum fascinating. People give good advice with the best of intentions and go out of their way to help others and yet their advice is hardly ever appreciated.

1 hour ago, Wildfire123 said:

Before the test I had Cookie Crisp cereal with milk (did not drink the milk. I hate milk except for in my cereal) and I had 3 chocolate donuts. Please Google that and let me know what you think.

Wildfire123, I googled it (‘heterozygous for the C677T polymorphism in the MTHFR gene’) briefly and many research articles came up. I have to admit that I’m neither a medical professional nor a native English speaker. If I spent hours reading about it and used a medical dictionary, I’m sure I’d learn a lot about the subject. However, I don’t have so much time and don’t feel like I’m the right person to give you advice about it. I’ve told you my opinion regarding your celiac testing process but don’t have enough knowledge about that genetic test and its interpretation. As for the glucose, it wasn’t fasting glucose obviously so I think you don’t have to worry about it. I’m afraid I’m not able to help anymore. 

Good luck    

8 minutes ago, Wildfire123 said:

I also had a gene test done at my psychiatrist's office.  Interestingly I had am heterozygous for the C677T polymorphism in the MTHFR gene.

I have no idea what it means, sorry.. I'd have to google it.

I see, I'm a bit suspicious of it myself.. Did you eat anything before the blood test or is this the 'fasting glucose' test? There are other tests available btw: HbA1c, Oral glucose tolerance test, C-peptide, GAD antibodies.

Well, the following applies to you: Celiace disease very unlikely. Exception: approx. 10% of patients with celiac disease are seronegative. (the left side of the diagram)

However, If I were in your situation, I would either persuade a doctor to order the full celiac panel or go to a lab and order it/pay for it myself (that's what I did eventually beacuse my GP is totally incompetent). Note: I don't live in the US/UK. 

Then if all the tests were negative, I would go gluten free anyway.

Btw I've noticed your glucose level is quite high.. 97.. ref. range: 65-99. (I'm not a doctor.)

Ok, so you've had TTG IgA - negative, Deamidated Gliadin IgA - negative and Total IgA - normal. A full celiac panel would also include the following: 

Deamidated Gliadin IgG 

Endomysium IgG 

Endomysium IgA 

TTG IgG 

Have you seen the diagram cyclinglady has given a link to? It's very interesting and useful.

Let us know if you have any questions.. 

2 hours ago, Wildfire123 said:

I'm not sure if I had full Celiac panel done. I just know they tested for it. Haven't had a biopsy done. Could it come up negative on blood work but still have a gluten intolerance of some sort?

Can you get copies of your blood test results? Trust me, it's better to see the results yourself, if possible. 

Let's say your GI doctor ordered the full celiac panel and the results are negative AND they are relevant because you were eating gluten at the time. You haven't had a biopsy but you still have unpleasant symptoms. Basically, there are two possibilities: 1. You have Non celiac gluten sensitivity. 2. You are a seronegative celiac.   

46 minutes ago, Deades said:

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

I can only confirm all that has been said.

Yes, you will harm yourself if you do that. The absorption issues are physical symptoms! Please, try to learn a bit more about celiac.. this forum is a good source of info, for instance. The gluten free diet has to be strict - 100%. Cheating wouldn't pay off because the villi in your small intestine would never get a chance to heal and recover. The function of the villi is that they absorb nutrients - celiacs have damaged villi and that's why they can't absorb nutrients properly (this can result in iron deficiency/anemia by the way - as in your case). Once a celiac goes gluten free, their villi start to heal and this has a positive impact on the body as a whole.

There is a lot more you can learn about celiac - you don't have to read scientific research articles, but please do read basic info that is available.

14 minutes ago, Deades said:

Is it possible is set some gluten?

What do you mean? 

14 minutes ago, Victoria1234 said:

Spoke too soon. Big D is back. No change in diet other than lack of apples since Ennis' suggestion. What is going on?

I never ever have had this happen to me. Especially for almost non stop 3 weeks. My usually curvy tummy is nearly flat for the first time in decades!

At least today is a day off from work due to a gunman in the school's neighborhood. 

I'm sorry to hear that. The only thing that comes to my mind that hasn't been mentioned yet is hormone fluctuations/imbalance or gynecological issues such as an ovarian cyst, a myom or endometriosis. D can be a symptom. I think a gyn. ultrasound and blood tests to check your hormone levels would be a good idea.  

Well, if I were in your situation, I would ignore the doctor who says you don’t have celiac and trust the other one who says you do. There are doctors who just don’t get it! As for the results of your endoscopy, it's very unlikely that you don’t have celiac, in my opinion. If I understand it correctly, your iron and ferritin levels went up thanks to the gluten free diet, right?  

I think, in general, anemia can be related to celiac. There are many types of anemia, though. So probably not all of them can be related to c. Since celiac interferes with nutrient absorption, I'd say that at least iron deficiency a. and B12 a. can be caused by celiac. This thread came to my mind:

AmyHauchtest and cyclinglady both said they had iron def. a. when they were diagnosed with c.

Chronic stomach pain and nausea are typical celiac/ncgs symptoms, of course.

As for the ANA test, the positive result doesn't indicate a specific condition, right? So further testing is needed. I'm wondering if the ANA test could be positive because of the anemia.

'A positive ANA test may be caused by:

Autoimmune connective tissue diseases. Examples include:

Rheumatoid arthritis. More than one-third of people with rheumatoid arthritis have a positive ANA test.

Systemic lupus erythematosus (SLE). Almost all people with SLE have a positive ANA test. But most people with a positive ANA test do not have SLE.

Scleroderma.

Sjögren's syndrome.

Juvenile idiopathic arthritis.

Polymyositis.

Raynaud's syndrome.

Autoimmune diseases of other organs. Examples include:

Addison's disease.

Diseases of the blood cells, such as vitamin B12 deficiency, idiopathic thrombocytopenia (ITP), and hemolytic anemia.

Liver disease, such as hepatitis.

Thyroid disease, such as Hashimoto's thyroiditis.

Medicines, such as those used to treat high blood pressure, heart disease, and tuberculosis (TB).

Viral infections.'

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You can also look at this thread:

Posterboy gives a useful link to an article - there is a whole section on Anemia.

'Anemia is a frequent finding in patients with celiac disease and may be the presenting feature.13,14 The anemia may be the only abnormality identified.14,15 Anemia was particularly common in patients with untreated celiac disease in the past but is still frequently encountered in undiagnosed adults.15,16 The anemia is usually hypoproliferative, reflecting impaired absorption of essential nutrients like iron and various vitamins. The prevalence of anemia varies greatly according to different reports and has been found in 12% to 69% of newly diagnosed patients with celiac disease.14–18 DH has also been associated with anemia that can be secondary to malabsorption of iron or vitamins or related to the pharmacologic management of DH, especially therapy with dapsone.'

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2 hours ago, Ennis_TX said:

My only blessing and usefulness in life is helping others with this disease by giving advice here, cooking for people, and making great moist and healthy baked goods, almond butters, and dairy free thai fried ice so people can enjoy food again.........I just wish to be more useful and feel like I am contributing more then it takes for me to live lol

I just wanted to say that I find your posts here very helpful. I’m interested in the neurological aspects of gluten sensitivity/celiac because my symptoms have been mainly neurological (terrible chronic migraines, anxiety, panic attacks, dizziness etc.) and a blood relative of mine had epilepsy. So tbh I’m scared of this kind of symptoms and don’t want to underestimate them. And some of your posts really helped me understand how celiac can manifest itself neurologically.. your mind turning against you etc. I’m really sorry you had to go through all that but find your advice useful.

A friend of mine has Autoimmune Thrombocytopenia. 

I doubt she has ever been tested for celiac properly, if at all.

Questions:

1. There seems to be a link between autoimmune diseases, so did anyone have thrombocytopenia and later found out you had Celiac/NCGS? Can t./low platelet count be a symptom of celiac, in fact?

2. Have your symptoms resolved on the gluten free diet? Is the platelet count normal now?

3. Would it make sense for her to get tested for celiac? If so, how do I tell her? I know that outside of this forum, not eating gluten tends to be viewed as a crazy thing. I know for sure that she does eat gluten.

Thank you.

I have the opposite problem now - trying to gain weight. However, approx. 10 years ago I was a bit overweight and was trying to lose weight. What worked for me was a low carb, no sugar, high protein, high fat diet. The 'brand name' was Atkins diet, but I think it's not that important. The principle is important, though: if you consume no sugar and almost no carbs, your body has no other choice than use stored fat for energy - there is a metabolic switch.

Basically, I was eating meat (chicken, turkey, fish, pork, beef, ham, bacon); vegetables (lettuce, tomatoes, cucumbers, bell peppers, radish, onion, garlic, steamed vegetables: peas, carrots, cauliflower etc.); cheese (mozzarella, cheddar, etc.); fats (olive oil, butter); eggs, nuts, olives and so on.

Note: I lost a lot of weight fast. However, the diet is very strict, in my opinion.   

23 hours ago, Celiac's Wifey said:

I am seeking more info from seronegative celiacs (celiacs where the blood tests did not show it) but later biopsy confirmed & from NCGS diagnosed whose symptoms were allieviated on the gfd

I'm a NCGS and the gfd has helped me a lot. My symptoms were neurological, GI and gynecological problems. A family member has celiac and two other family members (who are deceased) had gastrointestinal cancer and epilepsy.

In fact, I may be a seronegative celiac. My blood tests were negative but I didn't have an endoscopy/biopsy (lack of trust in doctors). 

23 hours ago, Celiac's Wifey said:

What blood tests for celiac disease did you do? / Were your numbers totally low / normal?

Gliadin IgG 0,2 (Ref.: 0,0 – 0,9) neg.

Gliadin IgA 0,1 (Ref.: 0,0 – 0,9) neg.

Endomysium IgG negative

Endomysium IgA negative

ttg IgG 0,1 (Ref.: 0,0 – 0,9) neg.

ttg IgA 0,1 (Ref.: 0,0 – 0,9) neg.

total IgA 1,98 (Ref.: 0,70-4,00)

23 hours ago, Celiac's Wifey said:

Were you gene typed?

No. It's quite expensive and I can't afford it now. But, I'd like to get these genetic tests in the future.

23 hours ago, Celiac's Wifey said:

Also were any of you ANA tested?

No, but I do have some thyroid issues - borderline hypothyroidism (TSH was borderline high).

23 hours ago, Celiac's Wifey said:

his sis never had a positive blood test but had tons of Marsh III lesions at time of endoscopy / first cousin had one equivical positive blood test as teen, when no damage was found on initial endoscopy doc advised her gluten was fine -- six years later new endoscopy showed major damage.

To be honest, this is exactly the reason I've decided not to rely on the negative blood test results. I don't want to keep on eating gluten for x more years only to find out that the damage is 'already severe enough' to be detected.   

DarthFlec, I agree that it’s a good idea to get tested for vitamin/mineral deficiencies. Some of the issues you have may be caused by magnesium deficiency, for instance. Especially this:

11 hours ago, DarthFlec said:

I've developed shaky hands and a feeling of fidgeting/restlessness in my muscles (arms, legs, even eyelids, just all over)

Given the symptoms you described, I suggest that you get tested for diabetes as well. Fatigue, loss of vision acuity, shaky hands, brain fog etc. can be signs of diabetes (Type 1/Type 2/Pre-diabetes).

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There are several different tests available – fasting glucose test is the most common one but there are also other tests that can be used (HbA1c, Oral glucose tolerance test, C-peptide, GAD antibodies).

I hope you feel better soon.