Worse After Celiac Diagnosis

[Jerri Ward]

I was told that after I was diagnosed with Celiac Disease that I would feel so much better. That my tiredness would be better, my depression would be better and my pain level would ease. Well, just the opposite has happened. I have been gluten-free for 18 mths. In that time I have lost 60 lbs. My Vit. D level has dropped so low that I have to take 50,000 units a month. I was having to take it weekly. up until last month. My iron is too low as well as my B12. My dr. is trying to figure why I cannot absorb it. I am tired all of the time. My pain level is not on any scale. They are doing tests to find out what is causing the pain and my dr. is refering me to a specialist at a Major University Hospital. I suffer from major depression. I did not think that it could get any worse, but since the Celiac started, it has gotten worse. I have completely gone down hill. This is something I wish I had never heard of.

[Ursa Major]

Jerri, have you considered the possibility of other intolerances? I am intolerant to all lectins, not just gluten. Rice will give me the same symptoms as gluten, and so will eggs and soy. Dairy is terrible as well. Both dairy and soy can cause blunting of villi and malabsorption, not just gluten.

I used to have intolerable joint and muscle pain and was on codeine 24 hours a day until I eliminated all lectin foods and foods high in salicylates (salicylic acid, which is what Aspirin is). Now I am not 100% free of pain (I am not sure that will ever happen, the damage from being poisoned for over 50 years of my life may be too great), but I very rarely need painkillers now.

I also used to be anemic with extremely low ferritin counts, and had low vitamin D levels. They are perfect now.

Please follow the links in my signature to find out more. It might just be the key to your problems.

[Lisa]

Jerri:

I am sorry that you have had it so rough. How were you diagnosed?

What are you doing regarding the gluten free diet.? Dairy offen can cause intestinal distress. Have your checked all your toiletries. After 18 months, I would assume that you have check for hidden gluten. If diligent, you should have felt a great deal of improvement.

Celiac, as I am sure that you know can be controlled solely by dietary restrictions. Have you been diligent with that?

There are other things that can mimic celiac symptoms.

I am sorry for so many questions...

[ravenwoodglass]

I was told that after I was diagnosed with Celiac Disease that I would feel so much better. That my tiredness would be better, my depression would be better and my pain level would ease. Well, just the opposite has happened. I have been gluten-free for 18 mths. In that time I have lost 60 lbs. My Vit. D level has dropped so low that I have to take 50,000 units a month. I was having to take it weekly. up until last month. My iron is too low as well as my B12. My dr. is trying to figure why I cannot absorb it. I am tired all of the time. My pain level is not on any scale. They are doing tests to find out what is causing the pain and my dr. is refering me to a specialist at a Major University Hospital. I suffer from major depression. I did not think that it could get any worse, but since the Celiac started, it has gotten worse. I have completely gone down hill. This is something I wish I had never heard of.

In addition to the good advice already given have you made sure to get rid of all possible sources of contamination, everything from soaps and shampoos, drywall dust and compound, glues, chalk for chalkboards, meds you take etc. Are you trying to eat out, do you drink distilled alcohols, do you eat alot of mainstream foods? Before I got relief from my depression and neuro symptoms I had to really ferret out the second hand gluten and CC sources and eliminate them.

Make sure you are absolutely gluten free, many of us think we are when in reality we are getting CC'd at every turn.

[Jerri Ward]

In addition to the good advice already given have you made sure to get rid of all possible sources of contamination, everything from soaps and shampoos, drywall dust and compound, glues, chalk for chalkboards, meds you take etc. Are you trying to eat out, do you drink distilled alcohols, do you eat alot of mainstream foods? Before I got relief from my depression and neuro symptoms I had to really ferret out the second hand gluten and CC sources and eliminate them.

Make sure you are absolutely gluten free, many of us think we are when in reality we are getting CC'd at every turn.

I was diagnosed with bloodwork and biopsy. I am very careful with everything that I eat. I check all labels. I cannot tell you the last time that I ate out. I have checked meds that I take and hair products and makeup. I am very careful. I have to be. In 96 I had most of my colon removed, so I don't have very much left to play around with. I don't want to end up with a bag. Thank you all for your suggestions. Sometimes I feel like I am in an ocean swimming backwards.

[deesmith]

I was diagnosed with bloodwork and biopsy. I am very careful with everything that I eat. I check all labels. I cannot tell you the last time that I ate out. I have checked meds that I take and hair products and makeup. I am very careful. I have to be. In 96 I had most of my colon removed, so I don't have very much left to play around with. I don't want to end up with a bag. Thank you all for your suggestions. Sometimes I feel like I am in an ocean swimming backwards.

Jerri,

I don't know if this will help you any, but:

I just found out that I was not absorbing calcium. This triggered my parathyroid gland to stop producing it, which in turn caused my blood to go searching elsewhere-- so it "grabs" it from my bones. (Ouch!) I asked the doctor if this is why I am having so much bone pain and he said that may be part of it. I have been gluten free for six months, so he suggested I take 1600 mg of Calcium supplements per day. I am guessing that he assumed that my intestines have begun to heal so I can absorb the supplements. He's having my thyroid checked, my Vit D, and a bone density test done. (Obviously you've already been through much of this and had your Vit D done and the bone density test)

Just wondering if you know what your calcium level is and if this may be part of your problem. I didn't see it on your list.

Good luck with your upcoming appointment with the specialist. I hope you get some resolution.

[Ursa Major]

Jerri,

I don't know if this will help you any, but:

I just found out that I was not absorbing calcium. This triggered my parathyroid gland to stop producing it, which in turn caused my blood to go searching elsewhere-- so it "grabs" it from my bones. (Ouch!) I asked the doctor if this is why I am having so much bone pain and he said that may be part of it. I have been gluten free for six months, so he suggested I take 1600 mg of Calcium supplements per day. I am guessing that he assumed that my intestines have begun to heal so I can absorb the supplements. He's having my thyroid checked, my Vit D, and a bone density test done. (Obviously you've already been through much of this and had your Vit D done and the bone density test)

Just wondering if you know what your calcium level is and if this may be part of your problem. I didn't see it on your list.

Good luck with your upcoming appointment with the specialist. I hope you get some resolution.

Calcium supplementation is a good idea. But it has to be combined with magnesium and vitamin D to be useful to our bodies. Since most people are more likely to be deficient in magnesium than calcium, a good supplement would be one that contains calcium and magnesium 1:1.

I was having bad knee and foot pain just recently, and my naturopathic doctor thought it might be from lack of magnesium. He said that not getting enough magnesium can cause joint and muscle pain, too, as well as other problems.

[Jerri Ward]

I was diagnosed with bloodwork and biopsy. I am very careful with everything that I eat. I check all labels. I cannot tell you the last time that I ate out. I have checked meds that I take and hair products and makeup. I am very careful. I have to be. In 96 I had most of my colon removed, so I don't have very much left to play around with. I don't want to end up with a bag. Thank you all for your suggestions. Sometimes I feel like I am in an ocean swimming backwards.

They checked everything in my bloodwork and everything was o.k. except my Vit. D which I take 50,000 units monthly and my B12 and my iron which they had not decided what to do about, because I am unable to absorb them. I wasn't as sick with the gluten and wheat as I am now. I have had about enough of this as I want. I would just like to sit down and have some real food. Be able to go out to eat once and a while. Where I live there are no gluten-free products available. When I have to go into the hospital, the nurses don't even know what I am talking about. My dr. told me that Celiac Disease was going to be the key to making me all better. Well I guess I must have picked up the wrong. key.

[CarlaB]

There have been many good suggestions here. The thing is, you should be feeling better if you're sure you've been gluten-free for 18 months. I would suspect there might be something else in addition to the celiac.

I also have Lyme Disease, and many of us on Lymenet's message board also have gluten intolerance or celiac though no connection between the two has been proven or even suggested.

With a positive biopsy, you definately have celiac, maybe you have other food intolerances as many do, but looking at your symptom list in your signature, you may want to check out the symptoms of Lyme -- www.canlyme.com.

PM me if you have more questions about Lyme and diagnosing Lyme as I don't want to take the focus of this thread completely off celiac.

It would seem that even if you do have other intolerances you should have at least seen some improvement with eliminating the gluten.

[loraleena]

Have you looked into Candida overgrowth. This is very common in celiacs and can look very similiar. There are 100's of symptoms it can cause, including the ones you listed. I urge you to read more on line.