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Almost Hoping I Have It...

Jenny Leigh

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Gutsy Girl Rookie
Gutsy Girl
Posted

Hi, my name is Jenny and this is my first post here... and it seems as though it certainly won't be my last.

I am 26 and I have never felt "right". Ever in my life. My health problems came to a head last Christmas, from a sudden vestibular problem that I am still battling. It started to dawn on me that all of my health problems might could be rolled up into one package - Celiac disease.

Tomorrow afternoon I have an appointment with a gastro doctor and I am specifically going to ask for Celiac testing. Considering everything I have gone through over the years, and the rapid deterioration of my health during the last year, it has gotten to the point where I hope I have Celiac... *THAT* I can treat.

I want to write out a quick run down of my various problems and am hoping I am not completely insane for thinking this might be Celiac. Any input would be appreciated (as well as any alternatives I should be trying), and if I do turn up positive, I'm sure I will be on these boards much more often.

History:

Psoriasis - Diagnosed at age 6, finally dormant at age 24

ADHD, inattentive type - Diagnosed at age 8, battling ever since

Unexplained trembling - All my life... 24/7. Worse when hungry, ill, or stressed

Low blood sugar - Age 14 the symptoms became apparent and progressively worse through the years. From age 23 to now it has become a serious problem

Prone to depression since age 14, put on anti depressants for this and ADHD at age 16

Generally sensitive stomach since 22

Lactose Intolerant (self diagnosed) shortly after turning 25 (mid last year).

Extreme blood sugar crashes, Vitamin D deficiency, hypothyroidism around Thanksgiving last year. Sensitivity to food increasing (not pain, but nausea, full to fast, slow digestion, diarrhea, constipation... etc).

Dec 18, 2009 - extreme migraine. Vestibular Neuritis. Nystagmus, Vertigo, hot flashes, fever, diarrhea, nausea, palpitations, numerous worthless ER and Doctor trips. Lose 20 lbs in two weeks flat. I am the walking dead.

January 2010 - Catscans; MRI - nothing

I have been horribly ill ever since then, always hungry, and either unable to eat, or unable to fill up. I look anorexic having lost so much weight. My breasts have shrunk to just below an AA and I can barely make it up a set of stairs without my heart rate elevating. Lately I have been re-diagnosed with Vestibulopathy after an ENG, which is an autonomic (peripheral) disorder. I have numerous other symptoms I have not listed, but everything seems to be stemming from these problems.

And another thing... Alzheimer's runs in my family on my father's side and I have read of a recent connection made between Alzheimer's and Celiac.

Let us hope I am not insane. If I don't have Celiac's I honestly don't know where to go from there. :( I'm so anxious!! I feel like I am slowly dieing. I'm sorry for such a long post. Thank you for reading and any thoughts you may have.

Hey Jenny,

I'm 26 as well. I need to go to bed soon, but here are a few thoughts for you to take with a few grains of salt and chew on before swallowing. LOL.

We share a lot of similar symptoms, but I don't have the thyroid problems that I know of. My bloodwork came back negative for celiac disease after I went gluten free for more than one year. I found out I was either Gluten Sensitive or Celiac after I was committed to a mental institution following being EXTREMELY SICK for months in 2009, not eating, not sleeping, ready to commit suicide. God had other plans for me, gratefully, and His grace has been sufficient. My GI doc (I haven't had INS and I'm poor so no docs for me until late 2010) recently said he believes I have Celiac with gluten ataxia. I kinda knew that since 2009, as the diet has confirmed that clearly for me (as well as a few CC incidents), but....

Check out gluten ataxia. I've written a fair amount about it on this forum, so I'm sure you can easily look up some of my posts and you'll find it.

Also, you said...

"I want him/her to check out vitamin deficiencies (B's, D, K, folic acid, calcium, etc) and also was going to press for them to somehow test my hormone levels."

My experience with blood tests for Vit deficiencies is that blood tests aren't very accurate. Example: I've been low in Magnesium a number of times. Only once did they give me an IV, but I've had heart, breathing, muscle spasm, and fainting issues from the deficiency. Probably also mixed with Vit B-12 deficiency. But anyways, I know when my Mag is low - it's very clear to my based on my symptoms and remembering how I've felt before. But only a small percentage (very small) of your entire body's store of Magnesium and Calcium actually resides in the bloodstream. Most is stored in bones and tissues. Therefore, it is possible with some Vit's and Minerals to be deficient but have bloodwork show that you're good. B-12 can also show false high reading because of a lack of intrinsic factor. I'm still fighting with my GI doc over that one. :P

You also said...

"Unless I feel 150% on the diet, I'll try to reintroduce gluten to see what it does and adjust (or not) accordingly."

I think we should properly warn you about GLUTEN WITHDRAWAL. It's worse for some more than others, but for me the gluten withdrawal was really intense. Like drug withdrawal - fever, migraines, you name it....it was B-A-D. Took me literally a few months before my body started to calm down after removing gluten. And that always-hungry despite just eating feeling started to subside too. That's a sign that you're not absorbing nutrition well from what you eat. But I'd say don't give up right away until you've tried it for a few months at least. Get through the withdrawal and then see how you feel.

Hope this helps a little...I don't know. Best wishes to you. Feel free to message me; I'm glad to help as much as I can.

Sarah

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Jenny Leigh Rookie
Jenny Leigh
Posted
  • Author

Hey Jenny,

I'm 26 as well. I need to go to bed soon, but here are a few thoughts for you to take with a few grains of salt and chew on before swallowing. LOL.

We share a lot of similar symptoms, but I don't have the thyroid problems that I know of. My bloodwork came back negative for celiac disease after I went gluten free for more than one year. I found out I was either Gluten Sensitive or Celiac after I was committed to a mental institution following being EXTREMELY SICK for months in 2009, not eating, not sleeping, ready to commit suicide. God had other plans for me, gratefully, and His grace has been sufficient. My GI doc (I haven't had INS and I'm poor so no docs for me until late 2010) recently said he believes I have Celiac with gluten ataxia. I kinda knew that since 2009, as the diet has confirmed that clearly for me (as well as a few CC incidents), but....

Check out gluten ataxia. I've written a fair amount about it on this forum, so I'm sure you can easily look up some of my posts and you'll find it.

Also, you said...

"I want him/her to check out vitamin deficiencies (B's, D, K, folic acid, calcium, etc) and also was going to press for them to somehow test my hormone levels."

My experience with blood tests for Vit deficiencies is that blood tests aren't very accurate. Example: I've been low in Magnesium a number of times. Only once did they give me an IV, but I've had heart, breathing, muscle spasm, and fainting issues from the deficiency. Probably also mixed with Vit B-12 deficiency. But anyways, I know when my Mag is low - it's very clear to my based on my symptoms and remembering how I've felt before. But only a small percentage (very small) of your entire body's store of Magnesium and Calcium actually resides in the bloodstream. Most is stored in bones and tissues. Therefore, it is possible with some Vit's and Minerals to be deficient but have bloodwork show that you're good. B-12 can also show false high reading because of a lack of intrinsic factor. I'm still fighting with my GI doc over that one. :P

You also said...

"Unless I feel 150% on the diet, I'll try to reintroduce gluten to see what it does and adjust (or not) accordingly."

I think we should properly warn you about GLUTEN WITHDRAWAL. It's worse for some more than others, but for me the gluten withdrawal was really intense. Like drug withdrawal - fever, migraines, you name it....it was B-A-D. Took me literally a few months before my body started to calm down after removing gluten. And that always-hungry despite just eating feeling started to subside too. That's a sign that you're not absorbing nutrition well from what you eat. But I'd say don't give up right away until you've tried it for a few months at least. Get through the withdrawal and then see how you feel.

Hope this helps a little...I don't know. Best wishes to you. Feel free to message me; I'm glad to help as much as I can.

Sarah

Hi Sarah! Thank you for your reply. The newest developments aren't terribly exciting. I've canceled my adrenal and thyroid tests, because I feel too "good". I want my adrenals tested when I'm doing bad. All my vitamins came back normal. Whoopdedoo.

I've been gluten free for a few weeks now and feel pretty good in comparison to the usual. I've dropped to about 106lbs and am reacting to foods I've never had a problem with. (I am buying everything whole and making everything with just salt, pepper, and butter. Also revamped my personal care products). Because of the continuing drama with my stomach and my fear of eating I've decided to do a LEAP MRT test... if for no other reason than to remove my fear. Going to work with a dietitian to come up with an elimination diet based on that. I'll know more after Christmas.

LEAP MRT has a note of controversy around here, but at this point, I figure it can't hurt anything but my wallet. If anything comes of that I'll start a new thread.

So far I am gluten, soy, and nightshade free for two weeks. I've reintroduced casein (lactose free) and feel a bit off but I don't know yet if that is because of casein or just me lapsing on my vestibular exercises. Of course I've been eating butter so I haven't been too strict on that. I figure I will give the gluten free diet around 2.5 months to show improvement. I've found a cousin of mine is gluten intolerant (she has skin problems, no GI symptoms)...

My thyroid is slipping back into a hypo state, which is not too much cause for concern for me. Hoping I can use it to my advantage and gain weight. Come February, I'll get it retested and start on sheep thyroids and adrenals and see if that helps... plus stay off the soy.

I don't have much else going on regarding everything. I just hope I can gain some weight. Overall I am doing much better... but this is how it does. I get better for a while, then eat or do something that triggers a relapse and I am back to square 1 shaving off 5 pounds each time.

We shall see!

Gutsy Girl Rookie
Gutsy Girl
Posted

I've been gluten free for a few weeks now and feel pretty good in comparison to the usual. I've dropped to about 106lbs and am reacting to foods I've never had a problem with. (I am buying everything whole and making everything with just salt, pepper, and butter. Also revamped my personal care products).

Because of the continuing drama with my stomach and my fear of eating I've decided to do a LEAP MRT test... if for no other reason than to remove my fear. Going to work with a dietitian to come up with an elimination diet based on that. I'll know more after Christmas.

LEAP MRT has a note of controversy around here, but at this point, I figure it can't hurt anything but my wallet. If anything comes of that I'll start a new thread.

So far I am gluten, soy, and nightshade free for two weeks. I've reintroduced casein (lactose free) and feel a bit off but I don't know yet if that is because of casein or just me lapsing on my vestibular exercises. Of course I've been eating butter so I haven't been too strict on that. I figure I will give the gluten free diet around 2.5 months to show improvement. I've found a cousin of mine is gluten intolerant (she has skin problems, no GI symptoms)...

I don't have much else going on regarding everything. I just hope I can gain some weight. Overall I am doing much better... but this is how it does. I get better for a while, then eat or do something that triggers a relapse and I am back to square 1 shaving off 5 pounds each time.

We shall see!

Jenny,

I know next to nothing about thyroid and I've never heard of the LEAP MRT so will have to google that when I have time and am more rested and alert. :)

Glad you've gone gluten free. But so sorry you're having trouble. *Compassionate smile.* I feel for you.

So...you said you're cooking with butter and doing simple stir-fry sort of deals with fresh veggies. I do this a lot too! Oftentimes, to avoid the butter and dairy, I will use a Tablespoon of olive or canola oil. I don't know if those will agree with you, but if you think there's hope in using that in leiu of butter, that may be an option to consider.

Are you able to eat any meat of any kind? Protein seems to be quite lacking in your diet with no mention of it so far. For me, I really like red meat but I have to just about BURN it before my GI system is able to digest it. I do only a little better with chicken. I've started increasing the dose of my probiotics and digestive enzymes lately, however, and I'm seeing some improvements in how I digest meats. I also bloat a lot less with these meats than I do when I eat any carbs, fruit, etc. I hate seafood, but it doesn't seem like many people here have mentioned bad reactions to it, so that could also be a good source or omega-3's. With digestive enzymes, if you take them, don't take more than recommended because some have Hcl added to increase stomach acid to improve digestion...but too much of a good thing can go sour (pun intended).

Staying away from soy is just good nutritional advice in general. It doesn't do kind things to humans. Even moreso, it can throw hormones outa whack because it mimics estrogen. I cut it out and have been glad I did - my guts, face (acne), and joints all thank me.

Wow...hope things work out for you, dear. I know it can feel overwhelming (especially around the holidays!!). If you think I can help, give me a holla! :D

Sarah

  • 3 weeks later...
Jenny Leigh Rookie
Jenny Leigh
Posted
  • Author

I've decided to start a new thread based on my LEAP MRT test results. You can see it here:

I'm beginning to think I *might* not be gluten intolerant due to no reaction from a gluten binge after 4 weeks of being completely gluten free... and yes... I'm certain I guarded against all cross contamination even through the holidays. I wonder if 4 weeks was long enough of a test.

I'm updating this post in case anyone ever researches my thread and because I *HATE* unresolved threads whenever I do net research.

Happy new year and best of luck to everyone!

Marz Enthusiast
Marz
Posted

I'm beginning to think I *might* not be gluten intolerant due to no reaction from a gluten binge after 4 weeks of being completely gluten free... and yes... I'm certain I guarded against all cross contamination even through the holidays. I wonder if 4 weeks was long enough of a test.

Hi Jenny,

Hope you find out what's wrong :/ Keep in mind that symptoms from a gluten- binge can happen several days after eating it, or only after several days of eating gluten consistently. The classic "gluten challenge" involves eating wheat 3 times a day for a week or two to see what effect it has on you. Eat a single-ingredient item, like cream of wheat, to keep it simple and ensure the reaction is due to gluten not something else.

It may also take a few weeks gluten-free to really start feeling better. You've already said you're feeling a bit better being gluten-free?

Thirdly, keep in mind symptoms can change after going gluten-free. My main symptoms before gluten-free were upset stomach, D, pain, nausea etc. Now stomach is great, but I get other reactions, like panic attacks, dizziness, extreme itchy skin without any stomach symptoms if I slip up.

I know how it feels to feel anxious over food, whether eating something is going to make you sick. I also suffer from a few weird food intolerances. :( After being gluten free for 6 months now, I've been able to start tolerating certain foods I could absolutely not eat before. So there is hope, if this is your problem it can get better!

Hope you get some answers soon!

Marz Enthusiast
Marz
Posted

Oh hey, did you get a endoscopy done with multiple small bowel biopsies? Didn't see you mention that in your test results, but maybe you did that earlier. Blood tests can be negative, with total atrophy.

On the other hand, you can have negative tests, "normal" biopsies like I have, and still see significant improvement gluten-free.

But if you're not seeing any improvement gluten-free, and a week long challenge isn't kicking you in the face, then it may be something else :/ Good luck again!

  • 2 weeks later...
cassP Contributor
cassP
Posted

been awhile since i followed this thread- but Jenny- your last TSH reading was 4.4??? that's still too high even tho its within "range".

also Jason- i need to remember to PM u- on the thyroid meds update- getting better, but still tweaking it- feeling better since they added Cytomel (T3) to the mix.

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  • 1 year later...
foam Apprentice
foam
Posted

Hey guys! been ages since I posted. I've been working on curing my health issues as a bit of a guinea pig with my doctor. I ended up getting my Vitamin B12 levels up to 1000 ! with the occasional injection and spirulina. However something still wasn't right with me and my white cell count (Eosinophil) was still all messed up.

In the mean time Vitamin D deficiency was all the rage in my city because it turned out most people were very deficient, then I noticed on my travels the further I travelled north in Australia (North has more sunlight) the smaller the gluten free section in the supermarket became. You go a certain distance north and gluten intolerance almost doesn't exist.. So I decided there must be something in this. Talking with my Doctor we decided to try testing my Vit D levels and they were also very low (20) and that was in the middle of Summer. So I started taking supplements 1x 50,000 IU capsule once a week for 4 weeks and then once each 3 weeks. I've done this for the past 10 months, it feels similar to a B12 shot except it takes longer to work and doesn't wear of in a week like B12, you stay energised permanently, between that and the B12 it totally fixes insomnia too. I'm a competitive table tennis player with a accurate rating so I'm lucky that I can use that to keep track of my general mental and physical performance, after sitting static for 2 years my table tennis rating improved 25% within two months of taking Vitamin D supplements... to the highest level of my life at 41 years of age.. amazing..

Currently it's near the end of Winter and I've just taken another test and my Vit D level is 67, that's still a little low so we've increased my dose to one 50,000 IU capsule per two weeks, the idea is to bring it up to 120 and see if that will remove my food intolerances and in turn fix my white cell count. I haven't out and out eaten bread yet but I have done a few wheat cookie tests without any adverse effects, no stomach pain bloating or anything. The tumor I developed in my neck is so far still there but it is shrinking and is probably about half the size it was a year ago so I hopeful I will win that war as I go along. My acne is 100% clear also and that was persistent for over 20 years until now. So generally my health is much improved. What I'm learning is that sunlight is just as important to humans as it is to plants, as in way way more important than any other nutrient/vitamin. I'll get back on here after my levels have been at or near 120 for a few months and after I've eaten a loaf of bread to see if I get sick or not :0

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