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Just Wondering

Highflyer

By Highflyer
in Related Issues & Disorders

Recommended Posts

Highflyer Newbie
Highflyer
Posted

I have been gluten-free for about 6 years and in the last two have developed all sorts of health problems...I was hypothyroid, had vitilago, and allergic to milk protein prior to becoming celiac disease...I ended up in a crisis situation sick as a dog for about 7 weeks and progressively got better thru eliminating gluten and being under the care of a great naturopath. That was about 5 years ago...Then I had one year of great health, felt like I was reborn.... About 2 years ago I began having problems with muscle and joint pain, was diagnosed with arthritis, increasingly develped fibromyalgia type symptoms which have progressed to the point of having numbness, tingling, burning in my foot which drove me to the MD...and more recently muscle spasm and extreme muscle fatigue and just generally feel like crap...been going thru the motions now since July...and still waiting to get in to see more specialists...nothing conclusive has been found as yet just a hodge podge of test results that make for a nice puzzle....

It occurred to me just today that about 2 years ago I reintroduced cheese into my diet and because it had no neg. effect on my digestive system I assumed I had healed enough from the gluten-free diet to tolerate it again...I never could tolerate it at all before....well I have read some info on arthritis being the result of food allergies, etc... Any wisdom at this point would be appreciated...I am barely functioning much of the time and desperate for anything that might give me a direction to go in to find results...getting mighty tired of waiting...

Thank you...so glad I found you folks.

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Lily Rookie
Lily
Posted

Highflyer,

My main complaint for years has been mucle pain, joint aches. It got so bad after I had my daughter that I couldn't pick her up. I saw a new dr. yesterday who tells me that these are classic symptoms of celiac disease!

I can't tolerate dairy right now, I'm in the process of healing up, but the dr. said there is the possibility that I may not ever get it back. Also, check into casein.

I was on arthritis medication for years and although it got me back to the point of functioning again, I just never got completely better. I was just recently diagnosed with celiac disease and it all makes sense now.

You'll be in my prayers,

Lily :D

gf4life Enthusiast
gf4life
Posted
allergic to milk protein prior to becoming celiac disease

The milk protein you are referring to is casein, right? In which case this is a lifelong intolerance. The reason being, that casein is a similar molecular structure to wheat gluten and therefor your body will see it as the same and you will have similar symptoms as if you were eating gluten. I don't think it causes the same intestinal damage, but symptoms will occur. The cheese could very well be what has cuased the other problems, and you might be wise to eliminate it once again.

I am also casein intolerant (as are many Celiacs) and it was very hard for me to accept that diagnosis. I like dairy products, and to have to give them up, along with all the gluten foods was very hard. Butter, cream, yogurt, cheese, cream cheese... all those foods would make eating gluten-free much better, but I want to be healthy, so I try to be dairy free as well as gluten free. I do occasionally slip with the dairy, and I think I will take your situation to heart. I don't want to spend the rest of my life suffering and if cutting dairy 100% will help, then I will do it.

I have had problems with pain in my joints since I was 4 years old. I now know this was caused by the gluten/casein.

I hope you feel better soon.

God bless,

Mariann

Highflyer Newbie
Highflyer
Posted
  • Author

Thank you for your responses...It is amazing to me that I have not made the connection until now but this is making some sense...I had no idea that all this neurological, joint, and muscle pain could be related to celiac/casein...just such a lack of info out there when it comes to this stuff especially from MD's. Looks like I am going back to the drawing board with my diet and see if I can turn this around with time...thank you...still rejoicing in finding this website and message board...and thanks for those blessings and prayers...think this journey may take a turn for the better...well, one can only hope...and hope is a good thing. :D Blessings to you!!

  • 2 weeks later...
Highflyer Newbie
Highflyer
Posted
  • Author

Well living in the boonies is not beneficial to one's health...I was to see the gastroenterologist yesterday...gave him my story...he suggested I do a gluten challenge for 2-3 weeks and have a biopsy to confirm celiac...I said "NO" well he said it is your body...indeed!!! I said I don't need to get sick for you to tell me I am sick...and you know I have my doubts he would be able to tell me anything after only 2-3 weeks...I have been gluten-free for years...except that now I realize my vits which were supposed to be gluten free may in fact not be since the more I took the more the fatigue, pain and muscle spasms increased etc...

I am totally wasted today from the 8 hours trip to the specialist yesterday but over the past 12 days or so of being dairy free again and not taking any gluten lased vitamins I have been progressively improving...have a long way to go tho and we are hoping that all the other weird blood tests will slowly return to normal too if the celiac disease has been the root of all of this...and not some other funky autoimmune probs...So far blood tests have shown that I have elevated parathyroid hormone, increased cortisol, extremely high folate (which makes no sense at all), too much creatinine. I am also osteopenic, have osteoarthritis, hypothyroidistis and vitilago...the hypothyroidism and vitilago have been around a while...the other stuff is new in the last two years.

Anyone else here every have a return of symptoms after a period of feeling great? My problem was that different symptoms showed up the second time around...mostly musculoskeletal...which threw me off...I was thinking no gastro probs meant I was doing ok with the celiac disease and developing other things....My gastro looked at me when I explained these symptoms and said well it sounds like you need a rheumatologist and a neurologist....hmmm...and all these symptoms are evidence of malabsorption are they not which is a gastro prob? Gotta love doctors...

Yes, there is hope...I had a year of great health after being gluten free for two years in which I saw steady improvement. I have been getting bits of it in hidden places...I have resigned myself to avoiding any packaged foods that are not expressly made by gluten free manufacturers...have a great gluten free company called kinnikinik that I don't think I have problems with...I am keeping a journal of everything that goes in my mouth and recording symptoms...assuming that I remember, that is...I am way more educated than I was a few years ago thanks to the internet...I also have an MD at the moment who seems to know more than the gastro dr...and who is determined to get to the root of all this... thankful for that...

Any old veterans around here who have dealt well with this for long periods of time??? Would love to hear anyone's input... :D

Guest aramgard
Guest aramgard
Posted

How's 50 years for dealing with this problem. I started with multiple allergies at about age 12, then this horrible, weepy, itchy rash all over my legs, arms and face at about 15. The allergist decided I was allergic to wheat and put me on a wheat free diet for 3 weeks, but then decided, because I was so painfully thin, that this did no good and put me back on wheat. Over the years I had multiple problems with bacterial infections constantly, then at age 38 I broke my leg. I actually had osteopenia but no one ever suggested a problem. It took over 6 months for my leg and ankle to heal. About that time I developed more allergies---to fish, shellfish, etc. Then started the bouts of alternate constipation and diarrhea and extreme fatigue. But still no one listened. The bouts of diarrhea kept getting worse and I developed lactose intolerance around age 58. At age 67 my grandson gave me a case of intestinal flu ( and everone else in the family). They got well, I didn't. After 6 weeks of diarrhea and such weakness I couldn't stand, I saw Danna Korn on TV and the next day asked my doctor for Celiac testing. He was flabbergasted, said that wasn't it but did give me the tests. Actually he was the first one who did what I asked. In two weeks he called and appologized, sent me to a gastro person who confirmed by biopsy, because the damage was so bad my villi were flattened. Yes, it is very frustrating. But to all of you who are listening believe in yourselves and get tested any way you can to catch this monster early. This diet is not easy but the alternative is much worse. Shirley

tylormom Newbie
tylormom
Posted

I have just found this website, and I was diagnosed with celiac disease 2 years ago! I am so have this and all of you on my side! I am amazed to hear all of the symptoms described here. I have been going to the chiropractor for nearly a year now for the many muscle and joint aches that I get. It does help! He actually asked me at one of my recent visits if my celiac disease was flaring up. I hadn't said a thing, but apparently he could tell from the inflammation in my joints. I had never associated my headaches and all the other stuff to celiac until I started doing some reading here the other day! I am presently going another round with severe anemia - seems to be something I cannot get a handle on. I'm glad to have the support of this place and all the people who understand and know this disease!

Darlene

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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