Intentional Glutening

[jjb1234]

I posted a month or so ago I have been noticing more consistent reactions to eating gluten.

Over the past 4 years I have not been eating much gluten as my daughter is on a medical diet and she does not get any gluten or grain products.

Well this past summer I had noticed that any time I did eat certain grain products (bread etc)I would have intense symptoms the next day that felt like food poison (very painful cramping and burning in the lower left, loose stools, nausea etc).

I scheduled an appt with gastroenterologist which will be next Friday.

Since I have decided I want to be tested for celiacs, I have been intentionally eating gluten products a few times a week.

I feel terrible. Consistent joint pain, fatigue, brain fog and near constant GI upset.

The thing is, since I am eating MORE gluten now, I have not been having many of those more intense and consistent feelings that feel like food poison.

I did this morning though which brings me to the forum today.

So some symptoms have gotten more consistent, but the more painful intense symptoms are not as frequent.

Any thoughts on this?

Thanks,

Jen

[ravenwoodglass]

I found for many of the early years before I was diagnosed that the intense D would come every few days but the other symptoms like the brain fog, joint and muscle pain, ataxia etc were always there. In my last 5 or so years before diagnosis the D was a daily and nightly occurance, except for the three days after the clean out for a colonoscopy. (My GI looked at me like I was nuts when I asked if I could take the Golightly a couple times a week LOL)

I don't know but maybe the intense 'clean out' my system would do those every few days would result in the intestines getting some temporary relief. The effects would then build up until the the next 'clean out'. This seemed to be borne out when I did my allergist guided elimination diet as it took 3 days for the D to hit when he had me add gluten back in.

It does seem you are definately reacting to gluten. It may take a good 2 to 3 months of at least 4 slices of bread a week for you to show up on testing though. It is up to you whether you want to go through it as it seems pretty clear your body is giving you the answer as to whether it wants gluten.

[jjb1234]

When you had the more intense D, was it very watery? Mine usually is loose, but formed and pasty ... that sticky stuff.

Also, did you have the lower left pain with yours? The pain is most intense with the BM and the BM lasts much longer than usual. About 10 to 20 minutes.

The more intense pain lessens once I am done but will linger for a while. Today the burning part of the pain is still here ... two hours later in the lower left but going upward.

I'd much rather not do all this. I know what my body wants right now ... a few days of just brown rice and veggies!

I have so many projects I need to work on and everything has been put on hold .. partly due to me not feeling so great.

I am anxious to get tested though as a positive result could possibly lead me to more answers about my daughters issues.

She has had symptoms as well though hers more serious ... stroke, epilepsy etc.

When she was an infant, she did not grow well at all and always had GI stuff. Painful bowel movements, very large frothy pale stools (was tested for cyctic fibrosis), very irritable etc.

She went on a medical diet for seizure control (LGIT ... mod ketogenic). We eliminated grain products.

The diet helped her a great deal. Beside seizure control, she gained some much needed wt and went to the 50th percentile and has stayed there.

I cannot though ever put her back on gluten simply to be tested ... no way!

But it seems as though no one will take the possibility of celiacs seriously without a positive result.

Also, in my family there are tons of illnesses that can be linked to celiacs (thyroid issues, cancers, epilepsy etc)

They too though would not take celiacs seriously unless someone else has a pos result I think.

Jen

[jjb1234]

RWG,

I am also curious about your ataxia. What did it look like exactly?

We both ( my dd & myself) have this.

My DD more often than I do, but I think I have always had this intermittently.

We are currently seeing a mito doc for possible mito.

We also have a pos DX of aut neuropathy.

[ravenwoodglass]

RWG,

I am also curious about your ataxia. What did it look like exactly?

We both ( my dd & myself) have this.

My DD more often than I do, but I think I have always had this intermittently.

We are currently seeing a mito doc for possible mito.

We also have a pos DX of aut neuropathy.

Ataxia is when gluten attacks the brain. I had seizures and extreme balance issues. I eventually needed canes to walk or to hang on to something like a shopping cart or walls.

I also had neuropathy with the pins and needles sensations in my arms and legs. My electromylograms for my right leg were basically a flat line. Most of my neuro damage and the lesions are on the left side of my brain so the damage is more noticeable on the right side. I don't drag my right leg anymore but there is still a lag time so I am hopeless at doing stuff like aerobics. I still have a 'crooked' smile and my left hand types faster than my right. All in all I am doing worlds better than I was though.

I also had the skin form of celiac since childhood. That looks like little blisters and it itches horribly. When the rash fades it leaves distinctive purplish scars that take a long time to fade. Is this what you meant when you asked what it 'looks like'? If you have DH that is a diagnosis of celiac so you may want to see a derm if that is the case. The derm would biopsy the skin next to the lesions for diagnosis. Make sure the derm is looking for dermatitis herpeformis though cause if the don't they will likely just label the lesions as 'atopic dermatitis'.

Your digestive symptoms and the fact that your DD improved so much on the diet is IMHO significant. I hope you can get some answers and are feeling better soon.

[Simona19]

Hi! I would like to ask you about the lesions in your brain. Are they white lesions? Two weeks ago I had MRI of the brain, and I have one white lesion on the right side of my brain. Is this gluten ataxia? I don't have trouble with walking. I'm having sensations of the pins and needles in my arms and legs. It's like they sleap, or something. Should I be worry? Do I need to follow with neurologist?

[ravenwoodglass]

Hi! I would like to ask you about the lesions in your brain. Are they white lesions? Two weeks ago I had MRI of the brain, and I have one white lesion on the right side of my brain. Is this gluten ataxia? I don't have trouble with walking. I'm having sensations of the pins and needles in my arms and legs. It's like they sleap, or something. Should I be worry? Do I need to follow with neurologist?

Yes those white lesions are called UBO's or unidentified bright objects. They are considered diagnostic of celiac in some areas of the world. Your neuro may be clueless about them, mine was, and all they can do is tell you to follow the diet. I wouldn't worry but I would stay strictly gluten free. I also have to avoid distilled vinegars and alcohols which many are fine with. While you are in the healing process I would advise you to avoid those also. When you are completely healed then go ahead and add them back in. I don't know if it is the brain impact that makes me sensitive to those items or not, I just know I react.

You may find sublingual B12 to be helpful.

[jjb1234]

Thanks.

Saw a PCP yesterday. She is really thinking celiacs as well and offered to do the testing but thought it'd be better to glutenize longer and maybe if consume more.

EEK!

I see gastro next week. She said will likely do the test and if neg may suggest glutenizing for another month and retesting.

RE: ataxia, I just wanted to mention that there are many causes ataxia not just celiacs ( I am hoping though celiacs is the explanation for us)

Same with lesions ... many causes for this as well. It is always good though to try and get to the bottom of those lesions whatever the cause.

Jen

[ravenwoodglass]

Thanks.

Saw a PCP yesterday. She is really thinking celiacs as well and offered to do the testing but thought it'd be better to glutenize longer and maybe if consume more.

EEK!

I see gastro next week. She said will likely do the test and if neg may suggest glutenizing for another month and retesting.

RE: ataxia, I just wanted to mention that there are many causes ataxia not just celiacs ( I am hoping though celiacs is the explanation for us)

Same with lesions ... many causes for this as well. It is always good though to try and get to the bottom of those lesions whatever the cause.

Jen

When you say lesions are you referring to brain lesions or skin lesions?

If you are referring to skin lesions and they are DH lesions that is celiac and a definate diagnosis.

As to the ataxia, yes there are many causes of balance issues. However if someone has ataxia and UBO's on an MRI that is pretty specific to gluten ataxia.

[jjb1234]

When you say lesions are you referring to brain lesions or skin lesions?

If you are referring to skin lesions and they are DH lesions that is celiac and a definate diagnosis.

As to the ataxia, yes there are many causes of balance issues. However if someone has ataxia and UBO's on an MRI that is pretty specific to gluten ataxia.

I was mostly referring to brain lesions.

I am just learning about the DH and will ask you more about that later.

As you know I am just learning more about celiacs ... very interesting to learn of all the symptoms other than gastro.

But RE ataxia & UBOs, I find it very interesting that it occurs with celiacs, but this combo of symptoms can also occur with other conditions such as epilepsy, chiari malformation (some w/ chiari have other conditions that cause the UBOs I think), multiple sclerosis and so on. And I would think that a UBO itself can sometimes cause ataxia ... I would guess if the lesion was on the cerebellum it could possibly do so.

But you know, you have really got me thinking about all of the folks I know that do have both ataxia & brain lesions. Some of their DXs include MS, epilepsy chiari etc ... I am really wondering if the etiology for some of these other chronic conditions may possibly be secondary to gluten intolerance.

I will have to take a closer look later and see.

Thanks for your input ... very very helpful.

Jen

[ravenwoodglass]

I was mostly referring to brain lesions.

I am just learning about the DH and will ask you more about that later.

As you know I am just learning more about celiacs ... very interesting to learn of all the symptoms other than gastro.

But RE ataxia & UBOs, I find it very interesting that it occurs with celiacs, but this combo of symptoms can also occur with other conditions such as epilepsy, chiari malformation (some w/ chiari have other conditions that cause the UBOs I think), multiple sclerosis and so on. And I would think that a UBO itself can sometimes cause ataxia ... I would guess if the lesion was on the cerebellum it could possibly do so.

But you know, you have really got me thinking about all of the folks I know that do have both ataxia & brain lesions. Some of their DXs include MS, epilepsy chiari etc ... I am really wondering if the etiology for some of these other chronic conditions may possibly be secondary to gluten intolerance.

I will have to take a closer look later and see.

Thanks for your input ... very very helpful.

Jen

The lesions with celiac are very similiar to the lesions in MS but they do not surround the myelin sheath. Nor do they produce the debris in the spinal fluid that is looked for with MS. I was at thought to have MS for quite some time but when they did my spinal tap the neuro was really surprised because the fluid was clear. Celiac can also cause seizures, I had them prediagnosis.

If you do a search using the word neurological and celiac you may be surprised what comes up.

[jjb1234]

The lesions with celiac are very similiar to the lesions in MS but they do not surround the myelin sheath. Nor do they produce the debris in the spinal fluid that is looked for with MS. I was at thought to have MS for quite some time but when they did my spinal tap the neuro was really surprised because the fluid was clear. Celiac can also cause seizures, I had them prediagnosis.

If you do a search using the word neurological and celiac you may be surprised what comes up.

I have searched all of the symptoms other than the GI symptoms.

And I really wonder ... how many w/ MS, epilepsy, and a number of other conditions are wrongly DXd or not adequately DXd.

I am so hoping for confirmation of celiac disease ... it would explain so so much. More than what I have already mentioned.

:/

We'll see I guess.

[ravenwoodglass]

I have searched all of the symptoms other than the GI symptoms.

And I really wonder ... how many w/ MS, epilepsy, and a number of other conditions are wrongly DXd or not adequately DXd.

I am so hoping for confirmation of celiac disease ... it would explain so so much. More than what I have already mentioned.

:/

We'll see I guess.

I have to wonder about that also. As I am sure you can tell from my signature and all the 'diagnoses' that I had fall by the wayside gluten free.

I always hate to say I hope someone has celiac but if the diagnosis frees you from symptoms and allows you to live pain free then that is my hope.

Please make sure you are fully glutened up for a couple of months before you get tested if you have been gluten free or gluten light and then do try the diet strictly for a while after your testing is done. Sometimes the body gives us answers that conventional medicine can not.