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3 Years On, Still Sick.

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Posted 05 September 2010 - 02:13 AM

Hi everyone. I've been gluten-free for about 3-4 years now (after 18 years of symptoms) I had a big improvement when I first went gluten-free but somehow I've ended up sicker than I was before (although not with the same the symptoms)

My stomach problems cleared up gluten-free (which were excruciating so was worth all the hassle on it's own) and I don't get those awful maddening itchy rashes as often. Also my migraines have thinned out and not as severe, join pain had been improving and my anxiety level had dropped as well. I did the elimination diet through the hospital so I've been screened for other allergies and intolerances, I saw their dietitian who monitored the gluten-free transition and the sensitivity I had to dairy cleared up after several months gluten-free.

After the first year I stopped getting better, at first it was just fatigue (though worse than when I ate gluten) I went back to the clinic and the dr told me to give it a bit longer. Now it's turned into utter exhaustion. I've had to quit work and I'm down to only 2-3 productive hours a day, I cannot push through it anymore without collapsing in pain that leaves me completely burnt out and barely able to move.

I now also have more chronic pain, joint pain, bone pain, muscle pain, I'm in the process of trying different pain meds. This year I've packed on a stack of unexplained weight (with no change to diet or amount of exercise) and I keep blowing up with fluid. I've recently had MS like symptoms (numbness, tingling, vertigo and I was unable to walk properly for 2 weeks) It's left me with leg muscle weakness, clumsiness and dragging one of my feet. MRI and a neuro consult came back clear. I was tested for vitamin deficiencies (I had low D the first year but corrected with a high dose supplement), they were ok, cholesterol ok. I have had low potassium in the past but with different symptoms (BP low, sinus bradicardia on an ECG with bad chest pain). I have osteoporosis (which I'm not old enough to have) but it was stable at the last bone scan. Chronic UTI's (and all the lovely things that go with them) have finally cleared up after multiple doses of antibiotics that went on for a year and a half, I saw a urologist and that's clear too. Tested for diabetes, rheumatoid, FBC, liver, stroke, HIV, thyroid all negative.

So far the only thing current that's shown up is a slightly high free testosterone (my estrogen/progesterone are ok) and ketones which the dr says is likely after a virus. Visually my colour and skin temp are a bit like something from day of the living dead, dark circles, grey pallor, hair and skin are flakey dry, limping, I don't look well. I also have the coeliac genotype which I don't know a lot about or if it's relevant for something else. Other than that apparently I'm healthy :/

Has anyone had something similar or know what might be going on? It feels like everything is shutting down, it's picking up speed and I don't know why. I haven't been able to get a diagnosis much less treatment and I'm running out of options.
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Posted 05 September 2010 - 04:11 AM

How strict are you with the diet? If you are still having DH flares that would mean you are getting CC'd somewhere. It also sounds like you may be ataxic which would also likely make you very sensitive to CC. Could you possibly be getting glutened from CC in either your processed food, your pet's food, cooking gluten for others or your toiletries like shampoos, lotions etc?
Are you on any meds or supplements and if you on any either OTC or script have you checked with the maker to make sure they are safe. Supplements can say gluten free but still have barley and wheat grass so be sure to read the whole label.
Are you consuming any distilled gluten grains like in alcohol or vinegars? Many are okay with them but some will react.
What type of work were you doing? We can't work around airborne flour and stuff like drywall compound and wall paper pastes can be an issue.
Have you tried eliminating soy and dairy again? Just because they were safe for you 3 years ago doesn't mean they still are. My soy intolerance didn't show up until I had been gluten-free a couple of years.

I hope you can figure stuff out and are feeling better soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)



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Posted 05 September 2010 - 05:38 AM

My niece is going through something similar right now. She was gluten-free for a few years, and recently has developed problems w/ no feeling in her hands and feet, no energy, etc. She is off work and they are investigating, she's done a million tests and nothing is coming back for her either. I've been lucky with my diagnosis and diet - I've gone gluten free but I also don't do too well with milk products or eggs - and find if I steer clear of those I do much better.

I honestly think it might have something to do with cholesterol and a vitamin D connection.. she also was a smoker and hasn't smoked for years, and I wonder if something in the cigarettes was helping expand her blood vessels slightly to help w/ circulation. I don't know - I know that this isn't much help, but it might be helpful to know I don't think you are the only one?

If you do find something, can you post about it?
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Posted 05 September 2010 - 09:03 AM

Thanks ravenwoodglass,

I've been on the diet as it was recommended to me by the allergy clinic and been pretty strict about it (I was really sick so did everything they told me to, I still have the books they gave me). I also went right through the whole house, kitchen, laundry, bathroom and cleared out everything I suspected might have gluten to be on the safe side. Home is pretty well set up as a gluten-free environment. Meds and supplements should be gluten-free, they're the standard vitamins the clinic told me to take. I do have distilled products but recently switched to the labeled gluten-free versions even though I'm allowed to eat the good quality ones with "no detectable gluten" and have never reacted to them. I don't risk oats though, gluten-free or not, they haven't agreed with me before.

I'd slowly been getting more fatigue since going gluten-free until a few months ago I got hit hard and quickly, stress was the trigger. I usually cook everything at home but I've been too unwell since then to do a good grocery shop and I've been glutened because of it (day to day I'm totally gluten-free but when things like this happen I do occasionally get glutened).

I thought gluten ataxia too since it seems more likely than MS but the MRI was clear, I don't know if that is definite for ruling it out.

Work could be a problem if I go back (hospitality) I stopped working in food years ago (pizza/pasta because, surprise, I was always sick), I'm still not sure if I could do bar work again, the smell of beer makes me queezy. In either case I haven't worked at all for nearly 2 years now and it doesn't look like I'll be back any time soon.

It probably wouldn't hurt to go back to the clinic for a review, if for nothing else than to be sure I'm not eating anything I shouldn't be, they're pretty booked so that will be a few months away. For some reason though I have the feeling that it's something I'm not eating, that I'm missing something in my diet rather than eating something I shouldn't be, hmm, lots to think about.
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Posted 05 September 2010 - 09:54 AM

I just noticed another reply (I must have missed it, my concentration is a bit off and it's taken me a couple of hours to write the last post)

I got the tingling, then my limbs numbed and wouldn't work properly (like the messages weren't getting through properly), then when the sensation came back I was hypersensitive to pain and only got back part use. I fell up the stairs this afternoon because I wasn't aware I wasn't lifting my leg high enough to clear the steps properly and I have a new wear pattern on the bottom of that shoe from dragging it although I'm not aware of doing it. I've never felt anything like it, it wasn't like the tingling I used to get in my feet before I went gluten-free, more like the sensation of not being aware of where my limbs were, like I'm using someone elses legs.

My cholesterol is ok, I don't know how quickly vitamin D can go up and down but I do wonder if the weakness and bone pain might be soft bones rather than osteoporosis since I'm a little young to have it, and after taking the vitamin D my bone density improved slightly which I though I was a little old for. Potassium has been a problem for me (I found something called hypokalemic periodic paralysis that was similar to what happened to me but I don't think it's that, it's pretty rare and lots of people have said they have had similar problems to mine) I've also had problems with cold, I can't tolerate it at all and crash within minutes of getting too cool.

I quit smoking the beginning of this year, smoking would actually make circulation worse, it wouldn't help with stomach cramps either. It's good that she quit, it's not easy to do.

I wish I had an answer for you, none of it makes sense and right now I'm feeling a little like a different species. I'm inclined to think it's something from too many years without a diagnosis since everything else I've had so far has been related, but really I have no idea what's going on.
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Posted 05 September 2010 - 11:13 AM

you mentioned something about having a virus or an infection??? and dragging your feet???

i have a good friend who they THINK has Reiter's Syndrome. they were baffled and now have it narrowed down to 2 diseases. it's a strange arthritis that happens after a virus or infection.
and you've said that you were negative on the MS, right?

ive learned a lot lately from people's illnesses, friends with MS, and Psoriatic Arthritis, and my friend who may have Reiter's.... we all have different genetic makeups.. like our Celiac & gluten genes- we have certain genes- and then it takes an environmental trigger for an illness to start. it's possible that you're body is reacting to an odd random unimportant bacteria & virus... and either it's temporary or its a new disease??? you may want to ask your doctor if any of these kinds of diseases should be considered and tested ???

hope you find your answers!
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(



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Posted 05 September 2010 - 11:33 AM

I'd bet you've got some sort of absorption/metabolic issue going on-- ketones are not a great thing to have excess amounts of. Maybe have them retested to see if they are still elevated? Your body typically produces them consistently when you are not consuming/digesting/absorbing carbohydrates, and nutritionally, usually indicates some form of starvation whether via metabolic disease or malabsorption/lack of intake. Be careful to have them retested after not being sick (er than usual) or drinking alcohol for a few days beforehand.

Did you have baseline bloodwork? Has a celiac panel (with IgG and IgA AGA) been re-run? A follow-up biopsy may be worth the effort just to be sure you don't have recurring or new intestinal damage. Could be either continued or new exposure or refractory celiac.

Kidney disease may be something else to investigate, especially if you have blood pressure issues in your family, but I would think they would have caught that in the standard panels already.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?



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Posted 05 September 2010 - 03:50 PM

I'd second the question on a second biopsy. It sounds very much like you are not absorbing well at all. :(

If it's not something else, it's possible you're still getting enough gluten to affect YOU, even if you are being on a technically strict gluten free diet. I absolutely believe that you've been very stringent; I was the same way. So sick that there was NO WAY I was going to cheat on this diet! But even being very strict, I have been discovering that I react to lower levels of gluten than some of the gluten free products test for.

My daughter, father, brother and I are all celiac positive. We have all stronger reactions to gluten the longer we've been gluten free (8 years for my father, 1 year for the rest of us). My brother can eat gluten free foods and foods with no gluten ingredients and he is fine. He had a followup biopsy due to an ulcer and has it proven: he is healed and healthy.

My daughter has reacted to some gluten free products that don't cause my brother any problems. She seems to be more sensitive to gluten than he is.

I've now reacted to foods that my daughter can eat just fine, so I'm even more sensitive. I seem to be stuck with eating food from gluten free dedicated lines, or possibly even gluten-free dedicated facilities. And my glutened reaction is MUCH worse now than it was before. Lots of neuro stuff. I'm having it to corn too, although I've kind of wondered if it's corn, or if it's gluten contaminated corn, considering that all 'naturally gluten free' grains can be called gluten free by law. They don't need to be tested. But when an independent group HAS tested them, it's finding a lot of grains and flours that are 'gluten-free' are actually gluten contaminated (some millet flour, whole grain millet, buckwheat flour, rice flour, and soy flour were contaminated, for example).

I know there could be other issues, too, but before you go through more rounds of testing, it might be worth it to drop all pre-made ingredients, get some oil/flours from gluten free dedicated facilities, and see if that helps.

Hope that you are feeling better soon!
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Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 


Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive



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Posted 05 September 2010 - 04:38 PM

Thanks ravenwoodglass,

Meds and supplements should be gluten-free, they're the standard vitamins the clinic told me to take.

But are they gluten free? Did you check yourself? Also, formulations can change over time so it makes sense to keep checking them now and then. I have been sick from taking vitamins pills with oat grass juice in them before. You got to really get a magnifier out to read some of the small print on those multi-vitamin bottles.

Eliminating all vitamin pills for a couple weeks might help if you aren't sure of their contents. I tend to stick with vitamin pills with fewer ingredients now so it is easier to detect a problem.

Corn starch is used as a binder for pills, but what starch can be used also. The rules in the USA are not specific about declaring what type of starch is used in a medicine. So you have to check if just says starch. Should really check anyway.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul


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Posted 06 September 2010 - 02:22 AM

Grr, my computer just crashed taking my post with it :( Testing my memory now, I'll stick with the short version.

Virus is a possibility to explain the latest illness but not why I keep getting sick or the chronic exhaustion, virus is where we're up to for the testing. It came on straight after after a 2 week post op headache so I could have picked it up in hospital, (I can't believe I forgot to mention it to my GP, I've only just remembered it). I'm + for the coeliac genotype with family autoimmunes and dust/mold allergy I can't do much more about living where I do.

I would not at all be surprised if I wasn't absorbing properly, the drs have been insistent on me taking specific vitamins because of test results I've needed them, I don't know if I would absorb enough without them or what they do to test results, if I can't get what I need from food/sun what else am I missing out on?

My normal diet is gluten free, the hospital clinic helped me set it up and it's high in from scratch food, I do sometimes get caught out though when I try something new especially if it's highly processed and some places I won't eat from at all because of cross contamination. I've had trouble with Darrel Lea as an example, packaged foods here generally have "processed on equipment..." and "may contain traces of..." if cc is an issue but that brand didn't because of the way so much of their product is packaged. The dietitian went right through everything with me, including meds/vitamins/toiletries and I still have the books she gave me. I'm also past the hunger dummy spits where I've been out and winged it, hunger is preferable to what's happened when I've let things slip. I just don't see anything getting through without me being aware of it.

I'm back at the GP this week so I'll follow it up with him. It's great to talk to people who know about this stuff, my friends aren't gluten-free and I think I'm driving them round the bend with it.
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Posted 06 September 2010 - 08:19 AM

Do you eat products containing naturally gluten free grains? Tricia Thompson recently did a study in which she tested naturally gluten free grains and found that many were contaminated with wheat. I buy my grains whole and have found gluten containing grains in them when I sorted through them. I wash the rest with soap before eating. That seems to clean them up enough so that I don't react. I am a celiac who is very sensitive to trace gluten.
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Posted 06 September 2010 - 01:15 PM

You mentioned an MRI, so you saw a Neurologist? Multiple Sclerosis is an auto-immune disease just like Celiac and it's not unusual to have both. I do. The "foot drop" is definitely a neurological symptom, ditto for ataxia. The tingling and needle-sensations in feet and legs are also classic MS symptoms. Given my experiences, I would emphasize and pursue a comprehensive Neurologist study, and -- of course -- double check to see that you are on a total gluten-free diet: food, medications, personal care items (hand cream, toothpaste, shampoo, etc.), and paying strict attention to cross-contamination. Good luck!
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Posted 06 September 2010 - 02:50 PM

Some questions for you:

1. Have you tried eliminating other foods? (soy, dairy, nightshades, grains like corn and rice)

2. Have you had your thyroid checked?

3. Have you been tested for other autoimmune diseases? (often these come with celiac)
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)




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Posted 06 September 2010 - 10:35 PM

I'm wondering about Myalgic Encephalomyelitis (ME) because of your overwhelming fatigue and pain. The disease is neurological and can appear MS-like. It starts with a viral encephalitis infection, so your post-op headache/virus really makes me wonder. Thing is, I think there is damage on MRI. Still worth a look.

http://www.hfme.org/ looks like a very informative website.
http://www.name-us.org/ is another with a lot of information.

You may have a more "typical" chronic fatigue instead, though it doesn't explain the foot drop and ataxia. Maybe fibromyalgia? If your doctors think that's the case, pick up From Fatigued to Fantastic by Jacob Tietelbaum. He became an expert in CFS when he came down with it himself in medical school.

Even if it's not ME or CFS, you might get some nutritional ideas from these websites as to what might be missing.
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Posted 06 September 2010 - 10:53 PM

I've pretty much eliminated glutening as the cause, even with the possibility of hidden sources it's the wrong profile and wrong symptoms for what's been happening but I'm sure the dr will send me back to the dietitian for a review anyway. I've already done the elimination diet for food intollerance and scratch testing for environmental allergies.

Multiple Sclerosis has been ruled out by my GP and a Neurologist via an MRI, neuro exam and nerve conduction study. Having said that the attack/relapse/fare (?) had subsided when I got to testing. I'd rung the MS society when I had to wait too long to see the neuro and been left struggling to look after myself during that time, they said it could show up later, that a lot of people get their diagnosis via a second opinion, and some are not diagnosed at all till autopsy, so no doesn't mean definitely no. The society have a list of specialist MS drs, I can get back to them later if I'm not convinced it's not MS.

First things first though I need to finish going through the diagnostic process with my GP to get to the bottom of what just happened and why I'm not getting any better, at least until he runs out of things he can test for. Then why I have so much exhaustion, why I keep getting infections and other illnesses when I didn't pre gluten-free. Also I've noticed milky white symmetrical bands across all 8 of my fingernails that weren't there last week, (they look like these ones http://img.medscape....liams.fig19.jpg) I've never had them before.

I've had my thyroid levels checked, repeatedly, been asking about it for a while because I've had all those symptoms for years.

Other autoimmunes are on the list, been tested for diabetes and RA so far and my liver, creatine and blood counts are normal. I'm back at the drs tomorrow so hopefully I'll have more news then.
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