I Think I May Have Celiac, What Should I Do?

[sen]

Hello! I've been reading up on celiac disease, and the more I read, the more I think I may have it, as it would explain a lot of what I've been feeling. However, I'd love for other people to read what I've been going through and chime in with their knowledge and experience. (Sorry if this is long!)

 

I'm a 20 year old female who is diagnosed with clinical depression and ADHD, which I take medication for both daily. The meds don't seem to be working to their full potential, as I still get mood swing type depression out of the blue, brain fog, confusion, and have poor concentration. I also suffer with fatigue; I'm almost always tired and running low on energy. The main reason I get depressed is because I don't feel well enough to do the things I'd like to, thus leading to a never-ending cycle of depression and frustration.

 

For the past several months to a year, I have fallen ill so many times, I've lost count. Some of the sickness has been for legitimate reasons, but I often times get low grade fevers for no particular reason. Another thing I've noticed: my normal body temperature is lower than most; somewhere in the 97F range as opposed to 98.6F, which I've read is something celiac sufferers also tend to have.

 

For the longest time, I've had this rash on my arm. The rash occurs at the follicles of my arm hair and make my skin look bumpy, flaky and red, though it's not usually itchy. I'm positive it's keratosis pilaris, which could be a result of gluten intake.

 

The last two times I've had my blood drawn at my physical, I was given a very high dosage of vitamin D because I apparently had a deficiency. I'm also pretty sure I'm anemic; anytime I get my blood drawn, I feel very lightheaded and weak, even up to a full day after the blood is taken.

 

My lower body feels unwell fairly often (couple times a week), and my gut has also been known to make very loud, gurgling noises from time to time. I'm a little overweight (150 pounds at 5'5") and my fat likes to build up around my tummy. I think I look a little pregnant, though I'm certainly not, haha.

 

I've had diarrhea and constipation frequently to the point where it's a normal thing (occurring at least one a week I'd say, sometimes more). I'm also fairly certain I'm lactose intolerant and have been for quite some time.

 

There's more symptoms I could list, but these are the ones that jump out to me.

 

Since I've been learning about celiac disease, I've started to watch how I respond to certain foods. Things like doughnuts and cakes seem to hit me pretty hard and give me malaise, bad anxiety, depression, nausea, brain fog, and gas between a half hour to up to a day or so after I've ingested it. Whenever I feel multiple of the symptoms I've listed, it's always been within several hours of eating something with gluten, I've noticed. I haven't tried going gluten free just yet because that would likely mess with any blood work I do in the near future.

 

I've been increasingly concerned with my health lately, but I'm afraid my doctor will write me off as just being overly anxious and depressed. Do you think it's probable that I have celiac disease, or could it be something else? Also, how should I talk to my doctor/set up an appointment about getting tested for celiac disease? Would it be wise to discuss the possibility of celiac disease with my psychologist and/or therapist as well? Any and all feedback would be super appreciated!

[GottaSki]

Welcome!

 

Celiac Disease is most certainly a possibility.  Do not remove gluten.  Go to your primary doctor with a list of symptoms written down (similar to what you have written here) and the list of proper tests for celiac disease.

 

Total Serum IgA

tTG-IgA

tTG-IgG

EMA-IgA

DGP-IgA

DGP-IgG

 

Additionally, since you already have history of low Vitamin D you should have these run:

 

B6, B12, D, K, Iron, Ferritin, Copper and Zinc

 

If you haven't had them recently add:  CBC and CMP.

 

As for speaking with your psychologist and therapist -- it is a good idea, but don't expect them to welcome the possibility with open arms.  Some in behavioral health are beginning to understand the connection between the gut and the brain....sadly it remains a rarity.

 

Hang in there

[nvsmom]

Welcome to the board.  

 

I agree with Lisa, get those tests done as it could very well be celiac disease.

 

Coming from my own personal experiences (of low body temp, fatigue and weight gain) I think you might want to be tested for hypothyroidism, or Hashimoto's thyroiditis specifically.  The thyroid controls your metabolism and being hypo can slow your body down by a fair bit.  Hashi's also commonly co-occurs with celiac disease. Try googling hypothyroidism a bit and see if it fits.  If you decide to test for that request the TSH (should be close to a 1 regardless of the lab range), free T4 and free T3 (should be in the 50-75% range of the lab's normal reference range), and TPO Ab (should be low). Avoid the T4, T3 or total T4 and total T3 tests as they won't give you good information to work with.

 

Good luck with the testing!  

[LauraTX]

Welcome to the forum, Sen! Looks like the ladies above have given you some great info as to what to get tested.  I definitely think you should get it looked into.  Even if it is a no, the peace of mind to rule something out is worth it.  Let us know what happens, and if you want to get a copy of your lab reports and post them here, we can help you figure things out if they aren't cut and dry.

[sen]

Thanks for the warm welcomes and advice so far, everyone! I have a psychologist's appointment Monday, but since my psychologist and doctor work in the same building, I'll try and schedule some kind of appointment then. Hopefully I can be taken in sooner rather than later! I'll definitely try to write what I can down so I don't forget to mention anything when I do get that appointment. For now, I'm going to keep eating gluten while I still can, 'cause this might be the last time I can eat it, hehe.

 

Hypothyroidism was another thing I stumbled across while looking at celiac disease, it could be possible I have that. Certainly sounds like I might! I think my half sister has some kind of thyroid problem (probably hypo) so maybe it's hereditary. I should probably talk to my mom and see what runs in the family, that might help me out a bit. I've been to my doctor at least twice before concerning the low grade fevers, but there may have been a other causes to them at the time (one instance may have been a skin infection, the other was because I forgot to take my medication) and because of that, I don't really think hypothyroidism was considered.

 

I'll keep you guys posted when I can! If anyone else reading on has anything to add, feel free to share!

[GottaSki]

Thanks for the warm welcomes and advice so far, everyone! I have a psychologist's appointment Monday, but since my psychologist and doctor work in the same building, I'll try and schedule some kind of appointment then. Hopefully I can be taken in sooner rather than later! I'll definitely try to write what I can down so I don't forget to mention anything when I do get that appointment. For now, I'm going to keep eating gluten while I still can, 'cause this might be the last time I can eat it, hehe.

 

Hypothyroidism was another thing I stumbled across while looking at celiac disease, it could be possible I have that. Certainly sounds like I might! I think my half sister has some kind of thyroid problem (probably hypo) so maybe it's hereditary. I should probably talk to my mom and see what runs in the family, that might help me out a bit. I've been to my doctor at least twice before concerning the low grade fevers, but there may have been a other causes to them at the time (one instance may have been a skin infection, the other was because I forgot to take my medication) and because of that, I don't really think hypothyroidism was considered.

 

I'll keep you guys posted when I can! If anyone else reading on has anything to add, feel free to share!

Don't try...this is important.

Write down your symptoms in a list.

Write down the tests you want ordered.

If you do take control of your meetings with doctors, you will see the benefit.

Hang tough Sweets!

[nvsmom]

Take your temp and document it along with your symptoms and dates, just like Gottaski said. You may see the patterns better.  I am hypo and my temp was often below 97F and when it hit 98 something I felt mildly feverish.  That slightly sick/mildly feverish feeling can accompany an autoimmune flare-up, I know it does for me.  And autoimmune problems can run in clusters so bring as much info as you can to the doctor.... Maybe even book a double appointment so you have more than 10 minutes to state your case to the doctor.

 

Hang in there.

[sen]

Alright, so I just got back from my psychiatrist's appointment. I was able to schedule an appointment with my doctor next week, so I'm happy about that. Progress!

 

The good thing about having my psychiatrist and doctor working together in the same building is that my psychiatrist has access to my medical records. According to them, my average temperature is about 97.9F. Last time I was checked for a thyroid problem (which was in April) I tested okay. I had blood tests done back in either March/April and things looked okay there too, though I don't know exactly which blood tests were done and if they could detect anything related to a gluten sensitivity. Most of this information is a few months old however, so who knows if things are still the same or if it has changed.

 

My psychiatrist suggested maybe I have fibromyalgia. My mother has fibromyalgia, which I don't think my psychiatrist even knew about. I'm thinking it might be possible especially since it's genetic, and the fact that fibromyalgia is linked to celiac disease would also make sense. Starting to wonder if my mom would benefit from going gluten free too!

 

Feels like I'm starting to see how this might come together and make some sense, which is a relief after being paranoid and confused for so long. We'll have to see what the the doctor and my blood tests say! 

[sen]

Alright, time for another update: I went to the doctor yesterday for my appointment that I mentioned in the last post. I told her my symptoms and she thinks celiac disease/gluten sensitivity could be the case. She put me on some probiotics that might help cleanse away any unhealthy bacteria in my system which might also be the cause, or at least part of the cause. I also got my blood drawn yesterday. Haven't gotten any results yet, but I'll keep you posted. Thankfully, my doctor seemed pretty 'in the know' about celiac disease and didn't dismiss it easily, which was something I was relieved about. She even said "The blood test might come back negative, but that still doesn't rule out having some kind of sensitivity to gluten." 

 

Because of that, my doctor also recommended a nutritionist to me. Like my psychiatrist, the nutritionist and my doctor are linked and in the same building, so this makes things super easy. I haven't made an appointment yet, but I will soon. Apparently this nutritionist also classifies as a holistic doctor, which I think is excellent in my case.

 

Unrelated to doctors, I've been doing a bit of reading lately and discovered that I'm a Highly Sensitive Person (HSP). Finding out about HSPs has explained an incredible amount of things in my life, I'm wondering if (possible) gluten sensitivity is one of these things. I'm sensitive to a lot of different things (other's emotions, being around too many people, bright lights, etc.), perhaps my digestive organs are also sensitive to certain foods. Would make sense!