Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Weird Snsations And Body Aches.....


GlutenGuy36

Recommended Posts

GlutenGuy36 Contributor

I am 36 years old recently diagnosed with Celiac Disease July 14th of 2008 after feeling completely ill since October of 2007. I have been on a gluten free diet since July 14th and im sure I have inadvertenly glutened myself. I am trying to seed out all the places gluten hides, cross contamination as well.

I want to know if anyone else is sore all over their body like it hurts to move. Almost like your organs are sore. My neck has been killing me as well. I am also having strange pains on the right side of my head. It's not like a headace just feels heavy/numb.

I cannot believe that it's just Celiac Disease causing me all of this misery. I have had tons of tests done and this is the only thing they have found.

Any responses will be appreciated very much. I'm so frustrated and tired of feeling like total crap.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Did they test your vit/mins? B12? Ferritin/Iron? Folic Acid? Calcium? Magnesium?

Was your thyroid tested? Those symptoms could be low thyroid which is prevalent in Celiacs.

TSH

Free T4

Free T3

And both antibodies

TSH should be under 3 per the new guidelines. But I was SEVERELY hypothyroid with a TSH of 2.8.

Do scour for CC issues. They are easy to get. I still find them now and again even though I am ANAL about my gluten-free. 100% gluten-free household. Also, it just takes time. For some up to 2 years to feel better.

Hang in there!

RiceGuy Collaborator

I agree about the nutrient levels. Supplementation of the ones ShayFL listed could really help a lot.

Also consider things like dairy, soy, eggs, nut, nightshades, and other common allergens. I would get all sorts of pains from nightshades. It is very common to become more sensitive to certain things for awhile, once you're gluten-free.

YoloGx Rookie

It is not unusual to have all kinds of body aches and pains with celiac. I certainly had them most of my life. I used to think that it was "normal" to hurt all over my body. The last of these pains finally went away last November when I went off all trace glutens even though I thought I was off gluten for over 12 years previous to that. Now it only comes back when I get inadvertently traced glutened. Even soap that had caramel color or tocopherol made from wheat germ (often found in many lotions and soaps) would do this to me. It takes a while to trace all this down. The official lists here on celiac.com helps to figure some of this out.

Often with celiac one does develop allergies or sensitivities to other things. Over time many go away though some may remain. For example I am also very allergic to many other things besides gluten--like the aforementioned tomato/potato/pepper family as well as nuts, sesame, eggs, carrots, yeast, milk products except for yogurt, all alcohol, etc. These too can make me feel pretty awful though each has its own peculiarities.

The thing is is that the crappy feeling does go away if you put attention on figuring this out and following your diet. It takes patience and persistence. However I have found its well worth the trouble, as I hope it does for you too.

Meanwhile other things can help, like occasionally taking the detox herbs dandelion or milk thistle (no tinctures however!!), cleavers or echinacea, and yellow dock or Oregon grape root--especially on the worst days. Best used as teas (boil the roots roughly 20 minutes, steep the leaves), however caps are OK too.

The soothing emollient herbs marshmallow root and slippery elm will do a great deal to restore the health of your villi, especially if taken between meals with plenty of water. Here caps work just fine. Their effect is further augmented if you also take bromelain/papain caps not just as a digestive aid with food but also between meals since this combination then acts as a fibronylitc agent that helps get rid of inflammation and scar tissue.

Taking good enterically coated acidophilus capsules also helps quite a lot since it helps restore the good flora which often get out of balance with celiac. I especially like Now's GR8.

If you have candida overgrowth, that too can make you feel pretty damn crappy. If you have it you should avoid all sugars including at first fruits, and especially dried fruits and other dried foods as well as various things that easily convert to sugar like white rice. With this condition its important to take things to kill off the excess candida or fungal overgrowth--like enterically coated oregano caps and garlic (Garlicin is good) and if you can manage it, grapefruit seed extract drops (use only 3 to 5 drops in a large glass of water). Here again the acidophilus is key to repopulating the good bacteria in your gut. FOS also helps. You can also rub thyme oil on your wrists.

I have found too that exercise can be key to getting rid of that crappy feeling even though that is the last thing you want to do at the time. The more vigorous the better, though at first you might just only feel up to going for a walk.

Other things that help are rolling around on a tennis ball to get rid of some of the worst pain, especially the lymph nodes about 3 inches below the arm pits as well as the shoulder blades etc. Small cat toy tennis balls work even better by the way... Or if you can get a massage it will really help, assuming you can handle enduring the pain...Saunas and hot baths help too...

For me one of the key things to turning this around apart from all of the above was when I discovered the virtues of taking co-enzyme B vitamins roughly two years ago. Turns out I was low on B-1 even though I had been taking B supplements for years. I need the co-enzyme variety instead in order to be able to assimilate the B-1. As it turns out without it I had Beri Beri like symptoms. My nervous system had seriously degraded and thus all the crappy pain on top of all the other reasons since without B-1 one has a hard time digesting basic proteins and carbohydrates, which in turn deteriorates the myelin sheath as well as is hard on the brain and heart etc. etc. You get the picture... After two weeks of taking the co-enzyme B's I stopped having heart palpitations and generally felt stronger than I had in years. I could also then tolerate taking a sauna or jacuzzi whereas previously I could not. I discovered taking the Country Life co-enzyme B's worked better for me than the sublinguals however since the latter often has sorbitol in them which seems to bother me.

As it turns out, I discovered since then that its difficult for most people who have celiac to metabolize B vitamins -- so in my opinion the co-enzyme B's should be useful to most since they go directly into the blood stream rather than having to go through the liver first as they do with other varieties of B vitamins.

This and other vitamin and mineral deficiencies are common with celiac, like Vitamin D (best if you can tolerate cod liver oil straight or in caps) and either calcium citrate of this product called E-zorb which seems to be the only calcium that is useful to me (I used to peel my fingernails easily etc.) and trace minerals (I like to take the liquid trace sea minerals).

And yes its true, a low thyroid can play a part. In this respect I have been fortunate not to have had that problem at least but my sisters do.

Hope some of this helps. I really sympathize since I have been there more often than I'd ever care to remember.

Bea

GlutenGuy36 Contributor
It is not unusual to have all kinds of body aches and pains with celiac. I certainly had them most of my life. I used to think that it was "normal" to hurt all over my body. The last of these pains finally went away last November when I went off all trace glutens even though I thought I was off gluten for over 12 years previous to that. Now it only comes back when I get inadvertently traced glutened. Even soap that had caramel color or tocopherol made from wheat germ (often found in many lotions and soaps) would do this to me. It takes a while to trace all this down. The official lists here on celiac.com helps to figure some of this out.

Often with celiac one does develop allergies or sensitivities to other things. Over time many go away though some may remain. For example I am also very allergic to many other things besides gluten--like the aforementioned tomato/potato/pepper family as well as nuts, sesame, eggs, carrots, yeast, milk products except for yogurt, all alcohol, etc. These too can make me feel pretty awful though each has its own peculiarities.

The thing is is that the crappy feeling does go away if you put attention on figuring this out and following your diet. It takes patience and persistence. However I have found its well worth the trouble, as I hope it does for you too.

Meanwhile other things can help, like occasionally taking the detox herbs dandelion or milk thistle (no tinctures however!!), cleavers or echinacea, and yellow dock or Oregon grape root--especially on the worst days. Best used as teas (boil the roots roughly 20 minutes, steep the leaves), however caps are OK too.

The soothing emollient herbs marshmallow root and slippery elm will do a great deal to restore the health of your villi, especially if taken between meals with plenty of water. Here caps work just fine. Their effect is further augmented if you also take bromelain/papain caps not just as a digestive aid with food but also between meals since this combination then acts as a fibronylitc agent that helps get rid of inflammation and scar tissue.

Taking good enterically coated acidophilus capsules also helps quite a lot since it helps restore the good flora which often get out of balance with celiac. I especially like Now's GR8.

If you have candida overgrowth, that too can make you feel pretty damn crappy. If you have it you should avoid all sugars including at first fruits, and especially dried fruits and other dried foods as well as various things that easily convert to sugar like white rice. With this condition its important to take things to kill off the excess candida or fungal overgrowth--like enterically coated oregano caps and garlic (Garlicin is good) and if you can manage it, grapefruit seed extract drops (use only 3 to 5 drops in a large glass of water). Here again the acidophilus is key to repopulating the good bacteria in your gut. FOS also helps. You can also rub thyme oil on your wrists.

I have found too that exercise can be key to getting rid of that crappy feeling even though that is the last thing you want to do at the time. The more vigorous the better, though at first you might just only feel up to going for a walk.

Other things that help are rolling around on a tennis ball to get rid of some of the worst pain, especially the lymph nodes about 3 inches below the arm pits as well as the shoulder blades etc. Small cat toy tennis balls work even better by the way... Or if you can get a massage it will really help, assuming you can handle enduring the pain...Saunas and hot baths help too...

For me one of the key things to turning this around apart from all of the above was when I discovered the virtues of taking co-enzyme B vitamins roughly two years ago. Turns out I was low on B-1 even though I had been taking B supplements for years. I need the co-enzyme variety instead in order to be able to assimilate the B-1. As it turns out without it I had Beri Beri like symptoms. My nervous system had seriously degraded and thus all the crappy pain on top of all the other reasons since without B-1 one has a hard time digesting basic proteins and carbohydrates, which in turn deteriorates the myelin sheath as well as is hard on the brain and heart etc. etc. You get the picture... After two weeks of taking the co-enzyme B's I stopped having heart palpitations and generally felt stronger than I had in years. I could also then tolerate taking a sauna or jacuzzi whereas previously I could not. I discovered taking the Country Life co-enzyme B's worked better for me than the sublinguals however since the latter often has sorbitol in them which seems to bother me.

As it turns out, I discovered since then that its difficult for most people who have celiac to metabolize B vitamins -- so in my opinion the co-enzyme B's should be useful to most since they go directly into the blood stream rather than having to go through the liver first as they do with other varieties of B vitamins.

This and other vitamin and mineral deficiencies are common with celiac, like Vitamin D (best if you can tolerate cod liver oil straight or in caps) and either calcium citrate of this product called E-zorb which seems to be the only calcium that is useful to me (I used to peel my fingernails easily etc.) and trace minerals (I like to take the liquid trace sea minerals).

And yes its true, a low thyroid can play a part. In this respect I have been fortunate not to have had that problem at least but my sisters do.

Hope some of this helps. I really sympathize since I have been there more often than I'd ever care to remember.

Bea

Thanks Bea,

That was alot of useful information. I do appreciate it very much. I do have a underactive thyroid which was diagnosed before the found the Celiac 9 months later. I am on medication for it and as far as I know Im at my optimum level depending on what doctor you see. Then all see to have a different idea of the right level to be at.

My abdmianl pains have stopped for the most part. Its just the all over body aches, tinnitus (ringing ears), heart palps, fatigue etc. I'm betting on mineral difficiencies. I felt so horrible and I still dont feel well enough to hold a job down. My gastro said it can take a while to really feel better. It's just so frustrating. -Ted-

YoloGx Rookie
Thanks Bea,

That was alot of useful information. I do appreciate it very much. I do have a underactive thyroid which was diagnosed before the found the Celiac 9 months later. I am on medication for it and as far as I know Im at my optimum level depending on what doctor you see. Then all see to have a different idea of the right level to be at.

My abdmianl pains have stopped for the most part. Its just the all over body aches, tinnitus (ringing ears), heart palps, fatigue etc. I'm betting on mineral difficiencies. I felt so horrible and I still dont feel well enough to hold a job down. My gastro said it can take a while to really feel better. It's just so frustrating. -Ted-

Well I do hope at least some of it helps. It really should. Just hope it didn't overwhelm. I know it was a lot at once.

So, just in case you haven't had enough advice (lol!), an Internet site that might be helpful is the Wilson's Thyroid Syndrome site. Oftentimes one isn't able to adequately convert T3 from the T4 medicine they give you, which is especially needed during the cooler seasons. The herbs they have on the Wilson's Thyroid site can really help, though again no alcohol based tinctures due to them being made with grains, usually glutenous. You can call them to make sure they give you is safe.

Often times low thyroid can be created by having had untreated celiac for years. Problems with the adrenals can be part of this. Exercise helps short circuit this if you tend to be over-reactive to stress all the time. I think in part this comes from ancient times when we had to hunt for our food etc. There needs to be the exercise or we get run down and sick more than the average person... Plus the celiac creates a lot of stress in the body for obvious reasons. I have a friend this happened to. He now takes 1/2 dose of the lowest level of thyroid medicine. The vigorous exercise for him is key. He uses one of those little stair steppers you can buy at Target. If he doesn't do it he feels so very tired and achy... The herbs help him too--the ones on the site plus the detox herbs now and then I mentioned previously.

Plus did I mention it? liquid chlorophyll--from Alfalfa is really fantastic for relieving a lot of the pain as well as just giving you more energy. The one made by NOW seems to be the easiest to use -- it has peppermint included which helps against the intestinal distress. When you think about it it makes sense that chlorophyll is so helpful since using it is almost like taking a blood transfusion, it is so similar with the composition of our blood.

Good luck and let us know how you are doing. You aren't alone.

Bea

GlutenGuy36 Contributor
Well I do hope at least some of it helps. It really should. Just hope it didn't overwhelm. I know it was a lot at once.

So, just in case you haven't had enough advice (lol!), an Internet site that might be helpful is the Wilson's Thyroid Syndrome site. Oftentimes one isn't able to adequately convert T3 from the T4 medicine they give you, which is especially needed during the cooler seasons. The herbs they have on the Wilson's Thyroid site can really help, though again no alcohol based tinctures due to them being made with grains, usually glutenous. You can call them to make sure they give you is safe.

Often times low thyroid can be created by having had untreated celiac for years. Problems with the adrenals can be part of this. Exercise helps short circuit this if you tend to be over-reactive to stress all the time. I think in part this comes from ancient times when we had to hunt for our food etc. There needs to be the exercise or we get run down and sick more than the average person... Plus the celiac creates a lot of stress in the body for obvious reasons. I have a friend this happened to. He now takes 1/2 dose of the lowest level of thyroid medicine. The vigorous exercise for him is key. He uses one of those little stair steppers you can buy at Target. If he doesn't do it he feels so very tired and achy... The herbs help him too--the ones on the site plus the detox herbs now and then I mentioned previously.

Plus did I mention it? liquid chlorophyll--from Alfalfa is really fantastic for relieving a lot of the pain as well as just giving you more energy. The one made by NOW seems to be the easiest to use -- it has peppermint included which helps against the intestinal distress. When you think about it it makes sense that chlorophyll is so helpful since using it is almost like taking a blood transfusion, it is so similar with the composition of our blood.

Thanks once again. I will be trying some of these things out to see if they help or not. Have you heard of anyone else on here that has been sick for a long time like me? I started having bad abdominal pains in October of 2007 and not diagnosed until July 14, 2008. Just makes me wonder how much damage due to malabsorbption was done.

I have never felt this awful. -Ted-

Good luck and let us know how you are doing. You aren't alone.

Bea


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mammajamma Rookie

I can sympathize with you... I was diagnosed officially on May 1 and went gluten-free that day. I started feeling much better within a couple of days... but still get belly pain/issues and weird pains as well... headaches, fatigue... I am thinking that it's time to get really REALLY careful with my food and try to stick to whole foods... I've not been so good that way :(

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,572
    • Most Online (within 30 mins)
      7,748

    Doing My Best
    Newest Member
    Doing My Best
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
    • Scott Adams
      This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Scott Adams
      Have you tried to start a gluten-free diet since your diagnosis in 2019?
    • trents
      Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability.  We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking.  3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
×
×
  • Create New...