Am I Crazy, Sorry For The Long Post....

[aliciahere]

K, I know that this is going to be a long post. I just need somewhere to put this online. I know that there are a lot of case studies and histories and everything, but I just need to know that I'm not crazy, and just to get it out of my system.

 

OK, so I'm four weeks into a challenge to try to confirm celiac. For the past two years, I had been eating Paleo (though not religiously, probably close to the 80/20). I did still occasionally have wheat products as they didn't "seem" to bother me. I try to donate blood as often as I can, and one time I came up with low hemoglobin, so they sent me to my Dr. Dr. checked for low iron, came back positive. Sent me on my way with OTC supplements and with blood work to check for low iron (and celiac, IgA) in three months.  I was tested in three months, my Iron came back normal, however my IgA was higher than what he would like to see. It was at a 6.8. Dr. asked if I was eating a low carb/low wheat diet - yeah Paleo. Now he advised me to eat the two slices of bread for a month and check blood work again (though the only thing he is testing for is Iga).

 

If I had to call it, I would have never suspected celiac, as my symptoms are fairly minor, however looking back, everything seems to fit. My history:

 

- Diagnosed with hypothyroidism in my early 20's. Put on Synthroid. Doses increased when I was pregnant. However, when I was starting to go Paleo, they went down a bit (auto-immune).

- Diagnosed with Reynauld's disease last year. I've really had it since I was a teenager, however, last winter was particularly bad and I finally got a diagnosis. The specialist thought that it was type 1, which is not considered auto-immune, however with all of this, I'm now questioning that.

- Increase in gas since starting the gluten challenge. I realized that when I was on Paleo, I had virtually no gas. Now that I'm eating it again, I am gassy (though not in a way that I would suspect something is wrong, I would call it above average gas). I did have this gas all through my 20's, prior to eating paleo.

- Brittle fingernails. They also have ridges and dry splitting cuticles. Have had this since I was a teenager.

- Inter-uterine growth restricted for my oldest , with low birth weight (though it was the opposite with my son, he was large and heavy).

- Low libido. It was getting better on paleo, but now back to nothing.

- Terribly sore and tense neck and shoulder muscles constantly since last summer. I have had several massages, and done exercises, but nothing seems to fix it.

- I used to always get sick prior to changing my diet. Multiple colds per year, and the worst cold symptoms that would last forever. On paleo I got much fewer colds, and with minor symptoms. Now on the challenge, I've gotten a cold

- Multiple cold sores prior to changing my diet. Throughout my late teens, it was almost constant. While on paleo, they were much less. Now on the challenge, I have a cold sore (haven't had one in months).

 

 

Family history:

 

- My mom has hypothyroidism and takes synthroid. She also has terrible seasonal allergies. She also has bad knees. She has a typical diet, and is a smoker.

- My mother's father is from Ireland and died of Alzheimer (which has more and more evidence to suggest that it is an auto-immune disease)

 

 

Am I going crazy to STRONGLY suspect that I do have celiac? A big reason I want to confirm the diagnosis so that I can get my family tested. Otherwise I would just start the diet on my own. My plan is to go six weeks and get the bloodwork done, and if it still doesn't fully confirm celiac, then I would request the full range of bloodwork and test again at 12 weeks.

[cyclinglady]

Usually for the blood test to be accurrate, you should be consuming gluten for 8 to 12 weeks and just four weeks before an endoscopy/biopsy. Do the research and share it with your doctor. The University of Chicago's celiac website is good for patients and professionals.

Here is the list of celiac disease diagnostic tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

Welcome to the forum and let us know how it goes!

[murphy203]

What CL said! I started with anemia, too, which led ultimately to a diagnosis of celiac disease. Please do take the anemia seriously -- I didnt, and suffered its symptoms needlessly. A HEAVY dose of iron supplements and a relatively quick diagnosis of the underlying cause have my #s moving in the riht direction. Best wishes in your journey, and is Alzheimers seriously autoimmune? Gah!!

[aliciahere]

Thank you CL and murphy. I will certainly keep up on my iron. My Dr. wanted me to test after a month, so I will, but if it comes back negative, I will absolutely insist on the full blood work at 12 weeks.Yeah, it's not definitive yet, but it's looking more and more like it is an autoimmune (I hope this link works)Open Original Shared Link

[aliciahere]

And I really, really hope it does come back positive after six weeks.... I feel so crummy. I'm wondering if this "cold" that I have is really a cold, or if it's just a gluten reaction, *sigh*

[kareng]

Just a comment - Who is paying for the Celiac blood test?  I doubt insurance will pay for it, have it be negative and then pay for it again in 2 months.  Just something to consider.

[aliciahere]

Oh, I'm in Canada 

[aliciahere]

Yay!!! I'm not crazy!   I didn't think I would be happy to be diagnosed with something, but it's been confirmed that I'm celiac. My IgA came back after only a six week challenge at 15, so confirmed. I won't have a scope/biopsy for months though. 

 

I think I may need to get a new Dr. though. As I was discussing how worried I was about how  I appear to have three auto-immune diseases (Celiac, Thyroid, Reynaulds), he stated, "Celiac is an allergy, not auto-immune"    

[RMJ]

Yikes, you definitely need a new doctor!