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Still Not Better

Worriedwife

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Worriedwife Apprentice
Worriedwife
Posted

My husband was diagnosed about 2 1/2 months ago. We have cleaned out the house, and we're pretty sure we've gotten rid of everything that had gluten in it. We also replaced all of our plastic utensils, strainers and bought a new toaster. I have stopped eating gluten as well, so that there is no chance of cross-contamination. Lastly, we have also gone through all of our soaps, shampoos and personal items for possible sources.

My concern is that my husband shows almost no signs of improvement. His symptoms are general joint and muscle pain, that had previously been diagnosed as fibromialgia. I'm just wondering how long it normally takes for these types of symptoms to go away.

Don't get me wrong, I'm happy that he has been diagnosed, and I do a lot of research on this for him, but I'm concerned. I would like to see him not be in pain anymore. Any ideas on how long we might have to wait? Thanks!

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CarlaB Enthusiast
CarlaB
Posted

Has he seen any improvement at all? Which symptoms?

How was he diagnosed?

It varies from person to person how long it takes to get better. If some symptoms improve and others don't, he could have a second condition.

AndreaB Contributor
AndreaB
Posted

I second Carla's response.

Worriedwife Apprentice
Worriedwife
Posted
  • Author

It doesn't seem like any of his muscle or joint pain has eased up at all. He doesn't seem to have any other symptoms.

Our regular doctor (who's pretty good) ordered the blood tests for him. I'm not sure why it occurred to him to do it. All three tests came back positive. We have an appointment with the GI doctor tomorrow. I'm sure he's going to want to do further tests, and I'm going to try to talk him into an endoscopy rather than a colonoscopy.

I guess we'll just have to wait and see.

AndreaB Contributor
AndreaB
Posted

Keep us posted if you will.

The muscle/joint pain can be from something other than gluten so if it doesn't get better then further testing from an alernative/integrative doctor would be something I'd suggest.

CarlaB Enthusiast
CarlaB
Posted

After 2 1/2 months, an endoscopy has a high probability of coming out negative even if he has celiac. You might have to just go on the blood work for the celiac diagnosis.

I'd definately tell the GI that you've not seen any improvement.

Worriedwife Apprentice
Worriedwife
Posted
  • Author

So, we went to the GI. We were very disappointed. First of all, the office staff seemed stupid and rude. The, the doctor wasn't very interested in helping us. He said that the blood work wasn't really conclusive. The only way to really check, the "gold standard" was to have a biopsy done. When my husband said he wasn't very happy about having to "gluten" himself for the test, the doctor said it wasn't a problem at all. Since he had been eating gluten for so many years, a few more weeks certainly wasn't going to help. Then the doctor told us that since he wasn't showing any digestive symptoms, he could probably going on eating gluten for the rest of his life and not really have any significant problems.

Needless to say, we were less than impressed with this doctor. Unfortunately, this is the only GI group in town. At this point, we've decided to continue going gluten free, and see what happens. If we want to get another opinion, we're going to have to go up to Phoenix. If anyone know of a good doctor in that area, I would appreciate some reccommendations.

Maybe out primary care doctor can find out if something else is causing the joint and muscle pain. If he was smart enough to test for celiac, maybe he as some other ideas.

Thanks for the words of support, this site was a great find!

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Karen B. Explorer
Karen B.
Posted

Have you checked for a local Celiac group? They might know a more supportive GI doc in a nearby town?

https://www.celiac.com/st_main.html?p_catid...-41107060117.a6

Two things come to my mind...

1. I take turmeric and fish oil every day for achy joints and it's made a big difference for me. I've been able to stop taking aspirin since I started this.

2. I had gradually weaned myself off of most sugar and all high fructose corn syrup, not because I had to but because it seemed like it was healthier. Recently, my co-workers got sneaky for my birthday and bought me a beautiful gluten-free birthday cake (lavendar and white with all the trimming) and I had a big slab of it. WOW! I felt like I was in sugar shock the rest of the week and all of my joints started aching and my muscles felt like I'd been beaten or something. I had no idea that sugar would have that effect on me. It's been 2 weeks and I finally feel like I might be getting back to normal.

I don't know how much sugar your hubby eats, but some of the gluten-free goods are loaded with it. Just a thought.

Lillian Newbie
Lillian
Posted
So, we went to the GI. We were very disappointed. First of all, the office staff seemed stupid and rude. The, the doctor wasn't very interested in helping us. He said that the blood work wasn't really conclusive. The only way to really check, the "gold standard" was to have a biopsy done. When my husband said he wasn't very happy about having to "gluten" himself for the test, the doctor said it wasn't a problem at all. Since he had been eating gluten for so many years, a few more weeks certainly wasn't going to help. Then the doctor told us that since he wasn't showing any digestive symptoms, he could probably going on eating gluten for the rest of his life and not really have any significant problems.

Needless to say, we were less than impressed with this doctor. Unfortunately, this is the only GI group in town. At this point, we've decided to continue going gluten free, and see what happens. If we want to get another opinion, we're going to have to go up to Phoenix. If anyone know of a good doctor in that area, I would appreciate some reccommendations.

Maybe out primary care doctor can find out if something else is causing the joint and muscle pain. If he was smart enough to test for celiac, maybe he as some other ideas.

Thanks for the words of support, this site was a great find!

Hi worriedwife, You sound like you have true concerns about your husband's comfort and that's great to know. My husband is extremely suppoprtive also and often eats gluten free food with me. Don't get discouraged. I was diagnosed about 2 years and it's still and will always be a daily battle/getting informed/becoming my own advocate sort of lifestyle. Thank G-d there are things we can do. One of them would be to go to a 'Vitamin Shoppe' vitamin place where all their own brand stuff is gluten free- my nutrionist from Rush Hospital in Chicago told me that. Perhaps he can get on some calcium/magnesium daily vitamins, glucosamine-chonondrite, fish oils and daily vitamins. Don't forget that while being on glutens and our villi being flat we've lost a lot of nutrients- so now that he is gluten free as much as possible, he'll need to begin to replenish all those nutrients. I found that advil, tylenol and all those gave me gastritis-redness in the stomach lining as shown on my last biopsy in April- which showed I was 'cured' but of course this is an autoimmune condition that I'll have the rest of my life. So again, don't get discouraged- talk to people in the 'Vitamin Shoppe' and go from there. I know- boy do I know- food is so much more expensive now, and there is no pill to cure this. So my new motto is-pay now or pay later. Invest in those vitamins and he'll feel a big difference. Hope this helps for now. Lillian

Worriedwife Apprentice
Worriedwife
Posted
  • Author

He does take a daily vitamin and fish oil each day. He also takes extra iron, as the doctor says he's a bit anemic. He tried the glucosamin/chondroitin, but it did not agree with him at all. I think it was mostly the chondroitin, but he's not really interested in trying again.

He's not much of a sugar eater. He's always been very concious of what he eats, and has been doing the cooking for us for the last 20 years. We don't eat red meat or poultry, only fish. Of course, lots of fruit and veggies with nuts thrown in for extra protien

I've not heard of using tumeric for joint pain before. I'm not sure that we have any in the house, especially as I don't do any of the cooking. Do you just use it in cooking, or take some other way?

happygirl Collaborator
happygirl
Posted

worriedwife,

I am sorry that your husband is still having problems. I wish that there was an easy answer....but it could still be related to gluten, or it could be another issue, or both.

Just a note, to confirm what you already know. The nutritionist that works at University of Maryland's Celiac Center (with a leading Celiac researcher, Dr. Alessio Fasano) recently spoke at a support group meeting and said that even eating gluten free for one week can begin to alter the results of a biopsy.

I definitely would find a support group to contact, and find someone who is willing to find the cause of your husbands pain. It would be worth having the Celiac blood panel re-run, to see if he is still reacting to gluten (i.e., if his numbers haven't come down, then it indicates it is at least part of the problem)

Best of luck.

natalie Apprentice
natalie
Posted

Hi,

My daughter was diagnosed 1 1/2 years ago. We were just at a pediatrician appointment last week. She still seems " slow" compared to her brother, she just can't keep up. I asked the doc about this. He said it can take up to 3 years to heal muscle wasting completely and get the vitamins back into her body. I was shocked.

Does your hubby seem a little better? You may want to see your doc for any additional testing.

Good Luck

Natalie

blueeyedmanda Community Regular
blueeyedmanda
Posted

It does vary person to person. I know my stomach symptoms went away fairly quickly but my other symptoms lingered a bit longer.

WorkNsurf Rookie
WorkNsurf
Posted

my stomach problems persisted for many months after not eating gluten. vegetable enzymes before meals and some Primadophilus definatly helped the system to break down food. papaya is a good fruit if available, it is full of natural enzymes.

Karen B. Explorer
Karen B.
Posted
----snip----

I've not heard of using tumeric for joint pain before. I'm not sure that we have any in the house, especially as I don't do any of the cooking. Do you just use it in cooking, or take some other way?

I get the turmeric in capsules at Whole Foods. I do eat curries and use mustard, but it's not enough to make a difference and it's not everyday. The capsules make it much easier. Also, my Mom found that Capsaicin (sp?) helped her joint pain.

Sometimes one thing will help and not another so it's good to have several things to try. I wanted to get off aspirin for my stomach's sake and everything else has side effects too. I've not seen any side effects from the turmeric but it takes a few weeks to kick in.

  • 3 weeks later...
crosstalk Newbie
crosstalk
Posted

Your husband may have another food intolerance(s). My symptoms show up about four hours after I eat something I am intolerant to. I honestly think that the wheat intolerance can bring about other intolerances esp. if you have been diagnosed after eating wheat for a lifetime. I suspect that this is the norm rather than the exception.

  • 3 weeks later...
JNBunnie1 Community Regular
JNBunnie1
Posted

I would honestly be a little suspicious about eating all that fish. If he has Celiac disease (and yes, if the blood tests say he does, then he does, there are no false positives) then his immune system is not up to par and he may be very overloaded with mercury. Fish just isn't safe on a regular basis anymore, for a HEALTHY person, I'd say max once a week. I don't know why you don't eat much meat but I would consider rethinking it, and adding back some organic meat. And I would get him a heavy metal test, STAT. His body is trying to heal, he needs protein and vitamins.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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