I Need Help Please!

[AliBell]

Hi everyone, I am a 21 year old female who was diagnosed with Celiac in January 2008. I am very strict with my diet and have never cheated and had gluten. I have read every book there is on celiac and know so much about it. However, I am not feeling better at all. I am a junior in college and this is really interfering with my life. I miss tons of classes and have no social life at all because I never feel good enough to go out.

I had a repeat endoscopy after being gluten free for 6 months and my villi were growing back (they were completely flat when I was diagnosed, as my doctors believed I was suffering for 4 years). The only symptom that has gone away is constantly having diahrea. Now I am constantly lightheaded, I get vertigo, I have terrible muscle aches, I get shooting pains through my body, I had a partial seizure, I am still constantly tired.

I have seen an endocronologist who told me I didn't have hypothyroidism although I was convinced I had that. I went to a neurologist who gave me an MRI and EEG which were both fine. My primary care gave me blood work for Lyme Disease and Diabetes, I didn't have those. She also tested me for other food allergies, which I do not have. She checked for tons of vitamin deficiences none of which I have.

WHAT DO I DO NOW? Does anyone have any suggestions?

Thank you so much,

Allison

[N.Justine]

you could still have:

• food sensitives instead of food allergies
  
• migraines (they mimic all sorts of neurological and muscular issues)
  
• even stress, especially emotional can cause havoc)
  
• depression
  
• anxiety
  

all of these can lead to those reactions with normal blood work

have you tried complementary therapies like:

• yoga
  
• meditation
  
• acupuncture
  

Feel better!

[ang1e0251]

Have you been tested for vitamin defiencies? That very common to us and can feel like you describe. I started taking a sublingual B12 and it help the muscle problems tremendously. Also you want to check your D and iron.

Sometimes dr's get caught up in the testing and forget the obvious. It's worth a blood test to find out, right?

[AliBell]

I have done a lot of pilates but I am often too tired to exercise.

How do you find out about other food sensitivities? Is there a way to test for that like there is for food allergies?

Also I have been tested for just about all vitamin deficiences.. all the B's, magnesium, folate, iron, etc. I take a multivitamin everyday too.

Thank you so much!

[FarmCat]

When I first went to my doctor with the idea that my brain fog and other symptoms might be food-related, she told me there were no reliable food allergy tests and suggested I try an elimination diet. Very wise doctor. Google "elimination diet" and you can find a lot of info.

Basically, you can't try eliminating just one thing at a time, because if you're bothered by more than one thing and you eliminate just one, you won't feel any better. On an elimination diet you cut out everything that people are commonly allergic to, as well as anything you normally eat more than once a week. You give that diet about two weeks. If you feel better, then you start re-adding one food at a time. I knew by the third day that my brain fog had been food-related because I felt so dramatically better. Figuring out which foods bothered me was a lot harder; it took quite a while to figure out that one of the main culprits was soy.

BTW, I did, later, try traditional allergy testing--skin and blood tests. I didn't react to a single thing. Not one! But a bite of anything in the legume family will have me foggy and dizzy within 45 minutes.

Good luck; I totally empathize. I spent several frighteningly foggy years before I had any inkling that my problems had anything to do with food.

[ang1e0251]

I second the elimination diet plan. Even some allergy dr's use this method. That's how I figured out about my other sensitivities. Also it helped me a lot to keep a food/symptom diary for awhile. Writing it down helped me skip the denial phase or that "selective memory". You know, I didn't feel that bad.

Let us know how you do.

[Tallforagirl]

  AliBell said:

...I have been tested for just about all vitamin deficiences.. all the B's, magnesium, folate, iron, etc. I take a multivitamin everyday too.

You may want to get a copy of those results and check what the actual numbers were.

When I had a full blood count after diagnosis, I was told that my B12 levels were within normal range, however I had ongoing fatigue. Another doctor rechecked my results and saw that although my B12 was within the normal range, they were very much at the low end of the range. He gave me a series of B12 injections and I started to feel much better soon after.

My doctor told me that you'd need to take at least 1,000 mcg of B12 daily if your levels are low, to get them up to normal. A typical multivitamin would have maybe 10 mcg.

Just my two pence worth.

[lizard00]

I would also say go for the elimination diet. I initially did this because I was having a heck of a time with my asthma, and by accident discovered that I was celiac. Through another process of elimination, I discovered that I can tolerate small amounts of dairy (I really shouldn't eat it at all, but I seem to have no dairy will power), but soy will make me pretty sick pretty fast. I started feeling better with the elimination of these things.

I would also agree with tallforagirl's suggestion to get your bloodwork results. Doctor's sometimes will see that your numbers are "normal" and not actually look to see where they fall. My vitamin D was on the low side of normal, so my doc suggested taking a d supplement. For fatigue, B12 and D were the two that helped my fatigue the most. Although the vitamin D produced the most dramatic result.

If you try B12, get a sublingual, as it is absorbed directly. For a while I was taking 2-3 a day, which was somewhere around 1000mcg per pill.

[AliBell]

Thank you all so much! I am going to start an elimination diet tomorrow!! I hope it works! I will let you know!!!

And also I just called my doctor to fax over all my blood work so that I can look it all over!!

[Bosque]

I also have to vote for the supplements. Remember that a Celiac

[kpm2319]

  AliBell said:

Hi everyone, I am a 21 year old female who was diagnosed with Celiac in January 2008. I am very strict with my diet and have never cheated and had gluten. I have read every book there is on celiac and know so much about it. However, I am not feeling better at all. I am a junior in college and this is really interfering with my life. I miss tons of classes and have no social life at all because I never feel good enough to go out.

I had a repeat endoscopy after being gluten free for 6 months and my villi were growing back (they were completely flat when I was diagnosed, as my doctors believed I was suffering for 4 years). The only symptom that has gone away is constantly having diahrea. Now I am constantly lightheaded, I get vertigo, I have terrible muscle aches, I get shooting pains through my body, I had a partial seizure, I am still constantly tired.

I have seen an endocronologist who told me I didn't have hypothyroidism although I was convinced I had that. I went to a neurologist who gave me an MRI and EEG which were both fine. My primary care gave me blood work for Lyme Disease and Diabetes, I didn't have those. She also tested me for other food allergies, which I do not have. She checked for tons of vitamin deficiences none of which I have.

WHAT DO I DO NOW? Does anyone have any suggestions?

Thank you so much,

Allison

I'm not sure if anybody has suggested this yet Allison, but have you heard of the Specific Carbohydrate Diet. I was diagnosed with celiac 2 years ago and have been gluten-free ever since but still have symptoms: constant bloating, fatigue, dizziness upon standing, numbness in forearms, loss of weight, insomnia, shortness of breath and some others. The SC diet eliminates sugars and starches and promotes intestinal health. It is used for celiac, chrohns, ulcerative colitis, diverticulitis, cystic fibrosis...Also, have you been tested for candida overgrowth? Alot of your symptoms resemble candida overgrowth. Here is a link to a list of candida symptoms: Open Original Shared Link

Its just a thought. I don't want to alarm you.

[chatycady]

  kpm2319 said:

I'm not sure if anybody has suggested this yet Allison, but have you heard of the Specific Carbohydrate Diet. I was diagnosed with celiac 2 years ago and have been gluten-free ever since but still have symptoms: constant bloating, fatigue, dizziness upon standing, numbness in forearms, loss of weight, insomnia, shortness of breath and some others. The SC diet eliminates sugars and starches and promotes intestinal health. It is used for celiac, chrohns, ulcerative colitis, diverticulitis, cystic fibrosis...Also, have you been tested for candida overgrowth? Alot of your symptoms resemble candida overgrowth. Here is a link to a list of candida symptoms: Open Original Shared Link

Its just a thought. I don't want to alarm you.

I agree! The Specific Carbohyrdate Diet has worked miracles for me. All those symptoms you speak of are now gone. I hope you give it a try.

[nuit.pieta]

Hi,

It is great to find someone else out there struggling like me (not that I want anyone else to have these problems). I have many similar symptoms like you (constant fatigue, and also dizziness, headaches, body aches, having a hard time thinking clearly). I'm 21 and a junior two. I have been struggling with classes and had to take last quarter off, which I will probably have to do for this quarter too. I also have almost no social life (mainly I only get to see my bf). I have been so stressed out about it. Let me know if you figure anything out. I hope things work out for y ou.

[bigapplekathleen]

I continued to have symptoms, too, despite having been gluten-free since 2003. I used the Specific Carbohydrate Diet (it was great!) and the PALEO diet (it was BETTER!). However, they finally figured out that I have Lymphocitic Colitis. Have you been biopsied for that? Apparently they have to take a minimum of 12-16 biopsies throughout the colon to catch it. Taking just few biopsies is NOT enough. There are also other things that cause continual diarrhea - things like gallbladder disease, IBS, other forms of colitis. Also, look VERy closely at your vitamin D level. If you have been sick, the optimal number is somewhere between 50-80 for Vitamin D and most of us hover around 20 or 30 or less, which isn't enough to fight disease, etc.

Good luck!