Please Help! Some Questions And My Symptoms

[glasgowfranko1981]

Hello all,

I have a few questions relating to the possibility of my having Celiacs . . .

Just some info before asking my questions:

1. I am a 31 year old male, physically fit, enjoy exercise, varied diet. No history of any allergies.

2. In a high stress media job with a hectic schedule, and a history of stress, anxiety and occasional bouts of depression since my teens.

3. In early January this year I had a bizarre rash appear on my face, unexplained. Disappeared in a few days and didn't think much of it. Quite strange.

4. In May this year I fell ill with a "mystery" illness/virus for a number of weeks on and off (more cold like than anything, but had me incapacitated for a few weeks with severe fatigue, muscle pain and "brain fog" afterwards as well). Things improved for a while, but the symptoms seemed to get getting worse again and again intermittently, the main symptoms being muscle pain in my legs (especially at night, waking me up), clicking joints (new for me at 31), brain fog and severe fatigue (so much so I couldn't even make a cup of tea, or hold a book).

5. Some bowel irregularity, bloatedness/flatulence etc intermittently as well, however, I have always suffered from bowel irregularity due to a blocked intestine (as a child). Overall, the main symptoms with this as a whole is the severe fatigue, brain fog and muscle pain (mostly in my legs).

6. Various blood tests have showed no signs of anything irregular so far, both with doctor and hospital - so, the discussion of something called "celiacs" came up with my GP. The doc suggested cutting out gluten as a test. I done this, and the symptoms seem to have dispersed, until lately when I think I may have accidentally eaten silent gluten in some processed foods.

My questions:

1. Can celiac's main symptom ONLY be the muscle pain (in legs), fatigue and brain fog?

2. Does cutting out gluten improve health for NON Celiacs?

3. How long after gluten has been ingested do typical symptoms come on?

4. How long following gluten being cut should things go back to normal?

5. I have a feeling blood tests will NOT show this up, what other tests are there?

6. Could this list of symptoms be ANYTHING else similar and NOT celiacs?

7. Even on a gluten free diet can stress make this worse?

Special note: My Mum died an unexplained death in 1994 when I was 12 after years of an unexplained illness with all the classic symptoms of Celiacs, which is also currently being investigated by a private investigator as 'undiagnosed Celiacs'.

Any info, suggestions or comments are greatly appreciated.

Thanks in advance!

[mushroom]

Hi glasgowfranko, and welcome:

Celiac disease can strike someone who has been perfectly healthy in the past, just as any disease. For some its main symptoms are fatigue, lethargy, brain fog, joint pain. More common are bloating, flatulence, stomach cramping, diarrhea and/or constipation. Some have neurological symptoms, some have skin rashes. So you fit the pattern on a number of counts. Usually the onset is triggered by physical disease or injury or severe emotional distress. In women it is often triggered by childbirth.

So your doctor suggested the elimination of gluten and you have felt better, until a likely episode of glutening, possibly due to cross-contamination or some unidentified ingredient.

Gluten free has been a fad diet among celebrities and athletes, the latter claiming it enhances performance, the former (supposedly??) doing it for weight loss or to follow the trend. There is no scientific evidence I know of that eating gluten free benefits anyone who does not have a gluten intolerance. In fact, athletes for years have been doing pasta carbo-loading before events

Time from gluten ingestion to symptoms varies for everyone, so is not a reliable indicator -- from hours to a day or two.

Time for healing after eliminating gluten is also variable. Depends on individual healing time and degree of damage.

If you have been eating gluten free blood tests will not diagnose celiac disease because they measure the number of gluten antibodies in the bloodstream. Without gluten the antibodies go away and you have to do what is called a "challenge" where you reingest gluten for (let's not get into how long because there is great disagreement on this) a time before the testing.

Many doctors will tell you these are symptoms of IBS (irritable bowel syndrome or, as we call it, I Be Stumped); some may postulate Crohn's disease or various other GI disorders.

The one method of diagnosis which has been used since testing first became common is the upper endoscopy where they take samples of the small intestine and examine them under a microscope looking for damage to the GI tract. Again, in the absence of gluten this can start healing and the testing can be negative. So, in my book doctors should (like in the days of the old wild west) shoot first, ask questions later or, in other words, test first, trial the diet later. Because after being gluten free you then have to go back to gluten for testing, and this is often a very painful experience because the body is so happy to be rid of gluten it punishes you when you bring it back

And yes, if you feel stressed, stress can make everything worse, even a pimple on the face before the prom

If this has not answered your questions feel free to come back with more.

[SMDBill]

Hello all,

I have a few questions relating to the possibility of my having Celiacs . . .

Just some info before asking my questions:

1. I am a 31 year old male, physically fit, enjoy exercise, varied diet. No history of any allergies.

2. In a high stress media job with a hectic schedule, and a history of stress, anxiety and occasional bouts of depression since my teens.

3. In early January this year I had a bizarre rash appear on my face, unexplained. Disappeared in a few days and didn't think much of it. Quite strange.

4. In May this year I fell ill with a "mystery" illness/virus for a number of weeks on and off (more cold like than anything, but had me incapacitated for a few weeks with severe fatigue, muscle pain and "brain fog" afterwards as well). Things improved for a while, but the symptoms seemed to get getting worse again and again intermittently, the main symptoms being muscle pain in my legs (especially at night, waking me up), clicking joints (new for me at 31), brain fog and severe fatigue (so much so I couldn't even make a cup of tea, or hold a book).

5. Some bowel irregularity, bloatedness/flatulence etc intermittently as well, however, I have always suffered from bowel irregularity due to a blocked intestine (as a child). Overall, the main symptoms with this as a whole is the severe fatigue, brain fog and muscle pain (mostly in my legs).

6. Various blood tests have showed no signs of anything irregular so far, both with doctor and hospital - so, the discussion of something called "celiacs" came up with my GP. The doc suggested cutting out gluten as a test. I done this, and the symptoms seem to have dispersed, until lately when I think I may have accidentally eaten silent gluten in some processed foods.

My questions:

1. Can celiac's main symptom ONLY be the muscle pain (in legs), fatigue and brain fog?

2. Does cutting out gluten improve health for NON Celiacs?

3. How long after gluten has been ingested do typical symptoms come on?

4. How long following gluten being cut should things go back to normal?

5. I have a feeling blood tests will NOT show this up, what other tests are there?

6. Could this list of symptoms be ANYTHING else similar and NOT celiacs?

7. Even on a gluten free diet can stress make this worse?

Special note: My Mum died an unexplained death in 1994 when I was 12 after years of an unexplained illness with all the classic symptoms of Celiacs, which is also currently being investigated by a private investigator as 'undiagnosed Celiacs'.

Any info, suggestions or comments are greatly appreciated.

Thanks in advance!

I'll just answer based on my situation and my current experience with celiacs. I've been gluten free 6 weeks now and glutened once, just 3 days ago.

1. Some people have no symptoms they can feel at all so I would imagine you could have none, one or any combination of symptoms if you have celiac. I have read many people's accounts and they widely vary. Most common is diarrhea or constipation, brain fog, tingling in arms and hands, and intestinal pain/discomfort. Personally, I had oily stools, skin irritations, constant sinus drainage and throat clearing, muscle weakness and tingling...all in addition to those more common symptoms. I also suffered daily headaches, occasionally resulting in migraines with nausea, vomiting and diarrhea.

2. Gluten free has become a fad, but wheat and other grains are enriched with a lot of goodies. Cutting them out for no health benefit other than fear or following what others do is senseless and expensive, plus may require supplements to replace what other foods were already providing.

3. I was glutened on last Sunday and by Sunday night i could feel a change. The pain started Monday morning and is still not gone, but very much improved.

4. Removing gluten never returns things to normal. Symptoms improve or disappear, but the slightest ingestion of gluten will reverse weeks, months or years of work in the gut. It's a constant battle and there is no end.

5. Other tests will require biopsies. THe most conclusive evidence will be through elimination of gluten in your diet. Tests may come back negative, but your body will not lie to you if you avoid gluten. I felt better in just 2 days of going gluten-free...life changing improvement in 2 days. Others take weeks or months, but mine was almost miraculous when I got my energy back, skin improved, intestines stopped hurting completely, etc. These last 3 days were a quick reminder of how far I had come and now I wish for that great feeling to come back. It's taken longer to be gluten-free, get glutened and get back to feeling normal than it did to cut out gluten and feel great.

6. I won't even venture a guess as to what your symptoms could be. I'm not a medical professional and my own experience is insufficient to accurately guess.

7. Stress makes most anything worse so i'll go out on a limb and offer that it's probably likely stress can make celiac even worse.

Best of luck. If you aren't gluten-free yet, get tested. If the tests are negative and you still believe you may be celiac, go gluten-free on your own and wait for your body to give you results. If you dont' see any results from a truly/completely gluten-free diet, then I'd say the tests were probably right.

[glasgowfranko1981]

Mushroom and SMDBill, thank you so much. You have both answered my questions - a relief in some of your answers to hear that, and in some more questions BUT this is good in both instances and I will get back to my doctor. It's nice to know I'm not alone in a lot of ways. I shall keep you posted. And anyone else, would love to hear your stories/thoughts as well! Thanks SO much!

[GFinDC]

My questions:

1. Can celiac's main symptom ONLY be the muscle pain (in legs), fatigue and brain fog?

2. Does cutting out gluten improve health for NON Celiacs?

3. How long after gluten has been ingested do typical symptoms come on?

4. How long following gluten being cut should things go back to normal?

5. I have a feeling blood tests will NOT show this up, what other tests are there?

6. Could this list of symptoms be ANYTHING else similar and NOT celiacs?

7. Even on a gluten free diet can stress make this worse?

1. Can celiac's main symptom ONLY be the muscle pain (in legs), fatigue and brain fog?

Yes, becasue celiac can cause a very wide range of symptoms, or no apparent symptoms at all, as in silent celiac.

2. Does cutting out gluten improve health for NON Celiacs?

This is true in some cases. Recent research identified non-celiac wheat sensitivity as as a separate condition.

3. How long after gluten has been ingested do typical symptoms come on?

This varies widely, mine have occured at 30 minutes in the past..

4. How long following gluten being cut should things go back to normal?

Some positive changes often occur within 2 weeks. But it may take much longer than that also. Since our bodies and the damage are not identical, the responses vary widely. Improvement may start quickly or slowly, and recovery can take months or years.

5. I have a feeling blood tests will NOT show this up, what other tests are there?

The celiac testing includes antibody blood tests. Also an endosopy is often done to take biopsy samples for microscopic review. Additionally Enterolabs does stool testing for antibodies, but it is not accepted as dignostic by mainstream doctors.

6. Could this list of symptoms be ANYTHING else similar

and NOT celiacs?

You may have low thyroid hormone, which is also associated with celiac disease. That can cause severe fatigue (Hashimoto's thyroiditis). Low vitamin/mineral levels can also cause fatigue. Celiac can cause malabsorption which leads to low vitamain and mineral levels. Diabetes can also cause fatigue.

7. Even on a gluten free diet can stress make this worse?

Stress can make fatigue worse, by burning energy that would be available otherwise.

[dreacakes]

Hi!

We have some similar symptoms... So I hope I can help!

Firstly, I highly suggest reading LOTS about gluten sensitivity and Celiac. Tests for Celiac are notoriously inaccurate, so you may have it anyway, and gluten sensitivity can be severe, and just as important to treat. I didn't have any major GI symptoms either. I was nauseous frequently, but just thought I had a sensitive stomach.

This video is a great primer, and the website is a good source of info too:

Open Original Shared Link

A lot of the symptoms you mentioned are often caused by inflammation and nutrient deficiencies (like the muscle spasms, which can be caused by a magnesium deficiency.)

I cut wheat gluten out of my diet and actually got *worse* for awhile... some people go through withdrawal. After that, I didn't recover, I actually kept getting worse in some ways. Not until I cut out all gluten (all grains have gluten in them) and went on a healing diet (this one: Open Original Shared Link) did I get better. Now I'm almost totally healed. It's important to know what you're doing, and get the support of a naturopathic doc, or someone trained in healing these issues with holistic, diet and lifestyle focused techniques.

Stress is *terrible* for gut issues. More info here: Open Original Shared Link

And gluten reactions can take up to 36 hours to surface. I usually feel gassy at first, then the next day I am really tired and foggy like I have the flu, and am more apt to have muscle spasms and back pain. But everyone's different.

It depends on how severe your condition is as to how long it will take for you to heal. It's taken me one and a half years of a proper gluten free healing diet to feel better. And I keep getting better all the time.

I hope that helped! Best of luck to you.

[AandGsmomma]

Fatigue and brain fog are some of my worst symptoms. My stomache pain and heartburn went away in days after going gluten free. If I get glutened I can feel it within the hour and it can last several days.

[GFinDC]

Gluten is a generic term for a protein and carbohydrate combo molcule in grains. So all grains do have gluten, but only the gluten proteins in wheat, rye, barley and sometimes oats are a problem for celiacs. Not all gluten is bad.

[dreacakes]

GFinDC-

It is the conventional wisdom that only the gluten in wheat barley rye and oats are problematic. However, a lot of researchers and health practitioners are now finding that all grains trigger reactions in those who have Celiac and are gluten sensitive.

For me, and many other people, we didn't begin to heal until we cut out all the grains.

Here are some articles that go into greater detail:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[GottaSki]

all grains trigger reactions in those who have Celiac and are gluten sensitive

The problem with this statement is that it is misleading.

IMO a better phasing would be:

all grains can trigger reactions in some who have Celiac Disease or Non-Celiac Gluten Intolerance

There are many that heal by the removal of the gluten proteins found in wheat, barley and rye ONLY.

Are there celiacs that need to remove more foods in order to heal - YOU BET - I'm one of them. But the problematic foods are not limited to grains. Dairy, Legumes, Eggs, Nuts, Seeds, Nightshades, Fruits and other sugars can all be problematic to the damaged digestive system. Once the digestive system is healed it is possible to ingest these items without causing further damage, while ingesting the gluten of wheat, barley and rye will trigger the immune response and cause damage, thus can never be consumed again.

[Lady Eowyn]

Just wanted to say great answers!

Would like to add that stress sure aggravates my celiac - seems to make me worse.

Also (please note IMHO) gluten is not a good thing for humans and I think a lot of people have varying levels of problems (tolerance) with it. I would recommend gluten free or at least very gluten light to anyone with any kind of long term health issue. I wouldn't give it to animals either.

My hubby kindly gave up gluten to help me and he no longer snores also his psoriatic arthritis that he's had for over 20 years has improved enormously.

Hope these comments aren't inflammatory in any way - just my view.

[GFinDC]

GFinDC-

It is the conventional wisdom that only the gluten in wheat barley rye and oats are problematic. However, a lot of researchers and health practitioners are now finding that all grains trigger reactions in those who have Celiac and are gluten sensitive.

For me, and many other people, we didn't begin to heal until we cut out all the grains.

Here are some articles that go into greater detail:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Hi Drea,

This link is for one of the studies mentioned in your links. It does say there is some increase in nitric oxide in some celiac patients (6 of 10 that were studied), but not nearly as much as for gluten. Four of 10 had almost no change in NO (nitric oxide). They are using NO as a possible marker of inflammation. I agree that corn can affect some celiacs, but not that all grains affect all celiacs. This study shows that 4 of 10 were not affected by corn. Oats are already known to affect 10% or so of celiacs.

So yes, we can have reactions to other things besides wheat, rye and barley. I react to oats myself and other non-grain foods also. Personally I am on a pretty low carb, low grain diet. But that is just part of also avoiding other foods such as nightshades, grapes etc that affect me.

I think the paleo diet is fine for people to follow, and don't see any problem with it. The issue is not all gluten in all grains IMHO, and this study you linked shows that. Please note also that the corn used for the test did test as having some wheat gluten in it. So that may have influenced the production of NO in the corn challenge.

Open Original Shared Link

The manufacturer claimed that their corn product was free from wheat or other cereals. We tested the product at the Swedish National Food Administration (Livsmedelsverket) and it was found to be contaminated with 82 μg/g (ppm), which is less than the usual allowed amount in a gluten free diet (<200 ppm) according to the Codex Alimentarius Standard for gluten free foods, and far less than what has been found to be a safe amount of gluten contamination when correlated with histology in oral challenge studies.Open Original Shared Link It cannot be excluded that the small amounts of gluten present in the corn preparation induced an inflammatory reaction as the mucosal patch technique is very sensitive.

[nvsmom]

1. Can celiac's main symptom ONLY be the muscle pain (in legs), fatigue and brain fog?

It can, but it's a bit less common as far as I can tell. GI symptoms seem to occur the most but those with GI symptoms often have those symptoms. I have fairly serious joint pain and muscle pain myself but I suspect it's related to hashimotos or possibly a yet undiagnosed case of lupus or UCTD.

2. Does cutting out gluten improve health for NON Celiacs?

For some. I have some friends who react quite strongly to gluten but it doesn't seem to last as long as it would for me.

3. How long after gluten has been ingested do typical symptoms come on?

About 15-30 minutes for me. I can feel it for a week or two.

4. How long following gluten being cut should things go back to normal?

Stomach aches started to resolve within days. The bloating and migraines took another few weeks and then the hair growth became noticeable a bit later. I still have a few health issues that haven't improved 4 month in... I'm hoping they will.

5. I have a feeling blood tests will NOT show this up, what other tests are there?

Biopsy and a good result from the gluten-free diet are the only other tests I know.

6. Could this list of symptoms be ANYTHING else similar and NOT celiacs?

Could be almost anything autoimmune related, so many symptoms overlap. Hashimotos could cause many of the problems you mentioned. Lupus, RA, UCTD or MCTD popped into my mind when I read about your pain.

7. Even on a gluten free diet can stress make this worse?

I personally don't know. I've never really noticed. It would make sense though.

I hope you continue to feel better on the gluten-free diet. Best wishes.