Please tell me this is all normal for celiac!!

[Odiesmom]

I am scared that I am losing my mind! I've had diarrhea since my gallbladder removal in 2011. I was told it was IBS-D. I had a hysterectomy a few months ago (kept ovaries) and started to feel horrible.  I thought it was menopause but my hormones are fine. I went to my primary multiple times, eye dr, endocrinologist, ent etc. Finally a Rhematologist diagnosed me via bloodtesting with celiac. I then went to a GI and she basically said I probably do not have it because only one blood test was postive but they will do endoscopy anyway to rule out. I have to wait months to have it done. My main issues now are depression, anxiety, severe eye twitching, constipation (after having diarrhea for years and living on immodium), confusion, joint pain, dizziness, tingling and numbness in hands/arms/feet,  I also lost 30 lbs.  I had a half a bagel yesterday and woke up with the worst headache and dizziness. I've been crying all morning as well. I feel weird and spacey.  I have been having trouble recalling words, forgetting why I walked in a room, forgetting names etc. I almost do not feel like having the endoscopy and just going gluten free now. 

[Tina E]

54 minutes ago, Odiesmom said:

I am scared that I am losing my mind! I've had diarrhea since my gallbladder removal in 2011. I was told it was IBS-D. I had a hysterectomy a few months ago (kept ovaries) and started to feel horrible.  I thought it was menopause but my hormones are fine. I went to my primary multiple times, eye dr, endocrinologist, ent etc. Finally a Rhematologist diagnosed me via bloodtesting with celiac. I then went to a GI and she basically said I probably do not have it because only one blood test was postive but they will do endoscopy anyway to rule out. I have to wait months to have it done. My main issues now are depression, anxiety, severe eye twitching, constipation (after having diarrhea for years and living on immodium), confusion, joint pain, dizziness, tingling and numbness in hands/arms/feet,  I also lost 30 lbs.  I had a half a bagel yesterday and woke up with the worst headache and dizziness. I've been crying all morning as well. I feel weird and spacey.  I have been having trouble recalling words, forgetting why I walked in a room, forgetting names etc. I almost do not feel like having the endoscopy and just going gluten free now. 

Did you have the gene test along with the celiac blood panel test? That can help confirm the celiac diagnosis.  My daughter panel numbers were SO high, we did not endoscopy. But since it is genetic, we all got tested. I have the gene but my panel numbers were borderline. I had the endoscopy, and my diagnosis was confirmed but the bunting of the villi. Get the endoscopy asap. Can and ask to be put on a cancelation list, or change doctors to someone who can do it sooner. Tell them you are so sick, you can't wait! And get the gene test. It's just a blood test. Be a strong advocate for your need to get help asap. 

[cristiana]

1 hour ago, Odiesmom said:

My main issues now are depression, anxiety, severe eye twitching, constipation (after having diarrhea for years and living on immodium), confusion, joint pain, dizziness, tingling and numbness in hands/arms/feet, 

Hi Odiesmom and welcome to the forum

I am so sorry you are going through all of this.

I am currently recovering from a small op so won't type a long reply.  I just wanted to tell you that I've suffered with all the above, with the possible exception of confusion, although instead I found it was difficult to find the right words for things. I was diagnosed with coeliac disease about ten years ago and still can get some of those symptoms if I'm subjected to gluten.  Currently I'm suffering from eye twitching, and I'm sure this is due to a small glutening incident over Christmas.

It would be good to find out if you have coeliac disease but in the meantime, is there anyway you can be tested for vitamin and mineral deficiencies?  Coeliacs are prone to these and regardless of whether you are one or not, it would be good to start addressing them as you may find some of your problems will improve.  For example, I started taking B12 and found this helped incredibly with my anxiety and depression. 

Cristiana 

[Odiesmom]

Hi thanks for the response. I’ve had a full bloodwork multiple times. I also take many vitamins! I am not deficient in any.

[cristiana]

1 hour ago, Odiesmom said:

Hi thanks for the response. I’ve had a full bloodwork multiple times. I also take many vitamins! I am not deficient in any.

How about iron?

[trents]

3 hours ago, Odiesmom said:

I am scared that I am losing my mind! I've had diarrhea since my gallbladder removal in 2011. I was told it was IBS-D. I had a hysterectomy a few months ago (kept ovaries) and started to feel horrible.  I thought it was menopause but my hormones are fine. I went to my primary multiple times, eye dr, endocrinologist, ent etc. Finally a Rhematologist diagnosed me via bloodtesting with celiac. I then went to a GI and she basically said I probably do not have it because only one blood test was postive but they will do endoscopy anyway to rule out. I have to wait months to have it done. My main issues now are depression, anxiety, severe eye twitching, constipation (after having diarrhea for years and living on immodium), confusion, joint pain, dizziness, tingling and numbness in hands/arms/feet,  I also lost 30 lbs.  I had a half a bagel yesterday and woke up with the worst headache and dizziness. I've been crying all morning as well. I feel weird and spacey.  I have been having trouble recalling words, forgetting why I walked in a room, forgetting names etc. I almost do not feel like having the endoscopy and just going gluten free now. 

Welcome to the forum, Odiesmom!

Your symptoms are classic for either celiac disease or NCGS (Non Celiac Gluten Sensitivity). The two share many of the same symptoms but NCGS is 10x more common. There currently is not test to directly diagnose NCGS so celiac must first be ruled out. In either case, the "cure" is lifelong abstinence from gluten.

Do you know which celiac disease blood tests were run, including the one you were positive for? Do you have access to the test report, perhaps online? If you would be willing, please post the scores for us, along with the reference ranges for negative vs. positive. The reference ranges are important because there is no standard from one lab to the other. They each use their own custom scales. There are several blood antibody tests that can be run to check for celiac disease. Some are more specific for celiac disease than others and some are more sensitive than others. The most common test in use is the tTG-IGA as it combines good specificity with good sensitivity but it is better when several tests are run. I find it odd that your GI doc would cast doubt on you having celiac disease given you do have a positive for one test and classic symptoms.

It is good that you will be having an endoscopy with biopsy of the small bowel lining. This is considered to be the gold standard for diagnosing celiac disease. But please realize you should be eating regular amounts of gluten until that procedure is complete. If you try to go gluten free between now and the test, or even severely limit your gluten intake, you will compromise the results as this would allow healing of the villi that line the small bowel. The Mayo Clinic recommends the daily consumption of two slices of wheat bread (or the gluten equivalent) for at least two weeks leading up to the endoscopy/biopsy.

[RMJ]

IF you decide to go gluten free now, you could repeat the celiac antibody test after being gluten free for 6 months to see if the antibody levels decline.  However, you must be tested at the same lab that did the original test. Results from different labs usually can’t be compared.

[Wheatwacked]

Please tell me this is all normal for celiac!!

Yes it is and more.   What Are the Symptoms of Celiac Disease?

 

Is the doctor that says you are not vitamin deficient the same one who says you are not Celiac diseased.

On 1/21/2023 at 10:30 AM, Odiesmom said:

I've had diarrhea since my gallbladder removal in 2011

Not enough choline. 

 

Quote

Gall Bladder, A Vital Organ That is Being Removed At Alarming RatesCholine – Used by doctors since 1947. Choline is essential to effectively metabolize fat, cholesterol, proteins, and carbohydrates. Experience has shown that SP Choline is been a Nutritional Essential for people who suffer severe gall bladder symptoms and/or after gall bladder removal. 

On 1/21/2023 at 10:30 AM, Odiesmom said:

I then went to a GI and she basically said I probably do not have it because only one blood test was postive

You can believe her or your own body.

On 1/21/2023 at 10:30 AM, Odiesmom said:

I had a half a bagel yesterday and woke up with the worst headache and dizziness. I've been crying all morning as well.

Vitamin and mineral blood tests only tell if our body's homeostasis organs are working properly. They cannot predict if your cells are replete. The sufficient vitamin D level of  more than 29 ng/ml is only enough to prevent Rickets and osteomalacia. It is not enough to run the autoimmune or the hundreds of other functions it has., A lifeguard has between 70 - 90 ng/ml vitamin D in his blood plasma. Ever seen a depressed Lifeguard?

On 1/21/2023 at 10:30 AM, Odiesmom said:

tingling and numbness in hands/arms/feet

Super good chance it's Thiamine (B1) deficiency.

On 1/21/2023 at 10:30 AM, Odiesmom said:

depression, anxiety

Not enough vitamin D, Lithium deficiency can cause agitation for immediate gratification.

Eye twitching:   Poor Nutrition: A variety of vitamins and minerals are responsible for proper muscle function, and eye twitches can be caused by an imbalance in these nutrients: electrolytes, vitamin B12, vitamin D, or magnesium.

Edited January 26, 2023 by Wheatwacked

[Maria Deal]

I had similar situation. I never knew the eye twitch was celiac related, mine twitched for decades & looks different now! I was told I had MS! It was Celiac. Anyway, yes get on a cancellation list or get blood test (I also was not aware of that), or find another doctor. Do not wait.

My understanding is if you stop eating gluten the numbers go down & will alter you biopsy’s. That’s what happened to me. I was wheat free, not necessarily gluten free totally in my house, for a few years because of Migraines from wheat, I figured out on my own… Had Endoscopy/Colonoscopy together, totally blunted villi, negative biopsy, but my iga , or whatever those tests are, came back positive for Celiac. Now my Rheumatologist knew something was wrong for couple years, but autoimmune often takes 8-10 years to diagnose, I already had Fibromyalgia, but numbers were rising. 
So maybe eat gluten once a week or twice a month until the test? 🤷🏻‍♀️  I know it’s aweful, I am sick for about 4-5 days after I get glutened. I hope you get tested quickly. 🙏🏼

[trents]

2 hours ago, Maria Deal said:

So maybe eat gluten once a week or twice a month until the test? 🤷🏻‍♀️  I know it’s aweful, I am sick for about 4-5 days after I get glutened. I hope you get tested quickly. 🙏🏼

The Mayo Clinic guidelines for the pretest gluten challenge are 2 slices of wheat bread (or the gluten equivalent) daily for 6-8 weeks leading up to the day of the blood draw and  for 2 weeks leading up to the day of the endoscopy/biopsy.

If it is not possible for you to carry out the regimen suggested by the Mayo, then you would need to trial the gluten free diet to see if your symptoms improve. If they do, you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity) but would have to live with the ambiguity of not knowing more specifically which one. The antidote is the same for either, however, and that is a strict adherence to a gluten-free diet for life.

Edited January 27, 2023 by trents