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Feeling Awful Despite The Gluten-free Diet.

Ephemeroptera

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Ephemeroptera Newbie
Ephemeroptera
Posted

I've been on a gluten-free diet for close to nine months now, yet I'm still experiencing symptoms I had prior to my diagnosis. Joint pain still appears and fades frequently. I was tested for rheumatoid arthritis and the test was negative, so that's not it. I'm often backed up, going to the bathroom only every 2-3 days. I also seem to have extremely poor circulation and I am always freezing. Last week, it felt like a rubber band was wrapped tightly around my right knee, causing a ridiculous amount of pain from the knee down. I always feel weak and fatigued. I'm only 17-years-old and I feel as if I'm falling apart. Is there possibly something more to this than just celiac disease?

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mushroom Proficient
mushroom
Posted
I've been on a gluten-free diet for close to nine months now, yet I'm still experiencing symptoms I had prior to my diagnosis. Joint pain still appears and fades frequently. I was tested for rheumatoid arthritis and the test was negative, so that's not it. I'm often backed up, going to the bathroom only every 2-3 days. I also seem to have extremely poor circulation and I am always freezing. Last week, it felt like a rubber band was wrapped tightly around my right knee, causing a ridiculous amount of pain from the knee down. I always feel weak and fatigued. I'm only 17-years-old and I feel as if I'm falling apart. Is there possibly something more to this than just celiac disease?

Hi Ephemeroptera, and welcome to the forum.

I hope at least some of your symptoms have improved with the gluten free diet :) but sorry you are still having so many problems. First of not all people with rheumatoid problems test serum positive. My blood tests are RA negative, have been all along. But that is because I actually have psoriatic arthritis, and not straight rheumatoid, I believe. People with polymyalgia rheumatica seem to test RA negative too. That is not to say that your problems are arthritis--not all joint pain is, it seems. Several posters have reported joint pain that disappeared along with the gluten, so it is disappointing for you that yours hasn't.

The first question I would ask is whether you have had the following tests done: Vitamin D, B12, folate, iron, potassium, calcium and magnesium, and thyroid (TSH FT3 and FT4) and ANA antibodies?? If not, I would request your doctor to run these tests because celiacs often end up deficient in these nutrients. Have you tried a magnesium supplement for your constipation? It can't hurt and it might just help your joints too. Feeling cold could be a sign of hypothyroidism which celiacs often develop, so I do think the thyroid test is important. If you have not had any of these tests done, finding the answers might provide you with some important clues.

If you have had them done, let us know your results; if you haven't had them done I would urge you to do so. Get a copy of your lab reports and let us know the results and ranges the lab uses.

Here's to feeling better soon. :)

AKcollegestudent Apprentice
AKcollegestudent
Posted
I've been on a gluten-free diet for close to nine months now, yet I'm still experiencing symptoms I had prior to my diagnosis. Joint pain still appears and fades frequently. I was tested for rheumatoid arthritis and the test was negative, so that's not it. I'm often backed up, going to the bathroom only every 2-3 days. I also seem to have extremely poor circulation and I am always freezing. Last week, it felt like a rubber band was wrapped tightly around my right knee, causing a ridiculous amount of pain from the knee down. I always feel weak and fatigued. I'm only 17-years-old and I feel as if I'm falling apart. Is there possibly something more to this than just celiac disease?

Your symptoms sound very similar to mine, and I have to ask this: have you looked for other food intolerances? I have celiac, but soy and dairy both set me off really badly; I also react to medications that have come into contact with any of the above allergens/ingredients. For me, the joint pain and limb pain is closely tied to both dairy and gluten; if either one is ingested, either can come back. Admittedly, my circulation hasn't really improved--I'm still cold all the time, but I'm giving that time. But yes--being really young and still falling apart sucks. I'm 20, and it sucks trying to explain to people that no, really, I do feel like poop and have an autoimmune disorder.

Emalemmaly Newbie
Emalemmaly
Posted
Your symptoms sound very similar to mine, and I have to ask this: have you looked for other food intolerances? I have celiac, but soy and dairy both set me off really badly; I also react to medications that have come into contact with any of the above allergens/ingredients. For me, the joint pain and limb pain is closely tied to both dairy and gluten; if either one is ingested, either can come back. Admittedly, my circulation hasn't really improved--I'm still cold all the time, but I'm giving that time. But yes--being really young and still falling apart sucks. I'm 20, and it sucks trying to explain to people that no, really, I do feel like poop and have an autoimmune disorder.

haha no way! you guys I hate to say this but as one extremely sad and fatigued 20 year old to the next we have to bound together. I've been for SURE diognosed with gluten and casein intolerances but I thought maybe soy too cause my dad has a mild allergy to that and I thought I wasn't feeling very well after eating it but I'm pretty sure I've been off it for a while now and I'm still getting what I call "super fatigue" and my knee is killing me. I used to exercise almost every day but I just don't have the motivation any more and I can't seem to shake the GI problems of constipation and bloating. I was fine ALL DAY until I just had a cup of coffee and the bridge of my nose has pressure in it again. Seriously... wt-eff? Why!!!!? I've been gluten-free for 2 weeks now and driving myself (and my family and roommates) nuts with speculations and possible further allergies I've possibly got. I'm reading about all these gluten withdrawls and I'm starting to become depressed.. will it ever go away!? I WAS FINE 2 YEARS AGO!!

Uhg. So frustrating.

AKcollegestudent Apprentice
AKcollegestudent
Posted

Emalemmaly,

I didn't start *drastically* improving dairy-free, soy-free and gluten-free for close to a month; almost five months in, I still have days when I just don't feel well. My energy levels are still not where they used to be a year ago or two years ago, when the symptoms were less severe. But there's been a couple instances where stupidity (both mine and other people's) have made me go, "Wait, why am I having symptoms?" Soy, for instance, got into my diet for two straight weeks because my college only cooked things in soy oil. It wasn't until I tracked down a cook in every dining hall that we figured out the problem. It could be that you only think you're completely soy free. And as one of my profs reminded me at dinner, even if you're not allergic to soy, soy sauce has wheat in it, so you could be reacting to that.

But it will go away. Eventually. For now, hang in there and find a cookie. (I'd suggest a peanut butter cookie if you can have nuts; there's a simple recipe floating around that doesn't have any of the specialty flours in it. Just google "gluten free peanut butter cookie" or "flourless peanut butter cookie.)

chatycady Explorer
chatycady
Posted

I'm sorry you are feeling so poorly, but you will get better. Just think positive and start working on healing your digestive system.

Intolerance are common, but don't have to be lifelong. Cure your tummy and you will be able to eat normal foods again. (gluten free of course)

Probiotics, vitamins, enzymes and good food - fresh fruits and veggies and fresh meat, should get you on the path to recovery!

Ephemeroptera Newbie
Ephemeroptera
Posted
  • Author

Thank you for all of the help. I have not had those tests done, but I'll be sure to do so.

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srthomas21 Explorer
srthomas21
Posted

Just a note on probiotics. They really do work. The best one for me is call PB8 . Its cheap and has really helped me. I've also tried Align and VSL # 3 both of which didn't work very well for me. I would try PB8 first and if it doesn't work try some others. Pb8 doesn't have to be refrigerated which is nice and I take twice the recommended amount but start out with the recommended amount and if it doesn't seem to do much bump it up a little.

dilettantesteph Collaborator
dilettantesteph
Posted

In my case, I had to get much more rigorous with my gluten free diet before I could feel in good health. I cut out most processed foods.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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