How To Be Sure?

[sapereaude]

So I've been battling a myriad of health issues for years. In the last five years I've had worsening depression, anxiety & ADD, which I now take medication for. Fatigue has crept up, it comes and goes but I'm now what I'd call extremely fatigued about a quarter of the time and somewhat fatigued 1/2 of the time. I never had allergies until a few years ago, but I developed allergies to dust mites, cats and dogs a few years ago and recent retesting now has me allergic to a ton of stuff (weeds, etc) that I didn't test positive for two years before.

I often have stomach pain, but I attributed that to the medication I'm on. (Welbutrin, Zoloft, Concerta) I occasionally get random diarrhea, but it isn't constant. My menstrual cramps are progressively worse and periods are wonky. I have started bruising easily. I often feel foggy and my memory has gotten progressively worse.

I was completely flattened fatigue wise in March, and a slew of blood tests found me positive for 'mild anemia'. I couldn't believe it was only mild given how I felt - it was physically painfully tired to even just sit and do nothing. Holding my head up was taxing. My Vitamin D was normal, but 'on the low' end. I started iron supplements and started to feel better, but not 100%. The fatigue came and went, but it clearly was not gone. I switched doctors and repeated the bloodwork, my blood counts were normal, I was no longer anemic, but my Vitamin D was low (20 ng/mL), so I continued the iron and added vitamin D supplements. Still tired after two months, I went back to the doc, repeated the Vitamin D & hemoglobin/hematocrit. Vitamin D was LOWER, now 13 ng/mL, rest was normal.

Yesterday, Doc prescribed megadose of Vitamin D (50,000 units 1x week). While she was off ordering tests I googled Vit D deficiency and celiac came up, I asked her to add that test to the bloodwork she was ordering (repeat CBC and Vit D). I am not sure which test she ordered, I don't know if it was a panel or just a single test, I remember IgA being on the sheet, but of course that is in the name of all the tests. Hopefully I'll hear back tomorrow or Monday as to the results (anyone know how long those test usually take?)

When I look up Celiac symptoms I feel like they fit me like a glove - it would explain sooo much of what is going on. However, I'm also reading how they can have false-negatives and how you can be gluten-sensitive and not true celiac, etc. I'm wondering if I should pursue this further regardless of the test results? If they come back negative would you consider pushing for a biopsy and/or further blood/gene testing based on my symptoms? I think regardless of what the outcome of whatever I do end up doing is, I'm going to try a gluten-free diet to see if it helps, but I need to do all testing before I do that. Who would you see for this? A gastroenterologist? So far this has all been my primary doctor. Thanks for the help

[MitziG]

Fatigue and ADD were my major complaints for 30 some years. It took 60 mg of Adderall, twice a day, just so I could barely function. I slept 16 hours a day and staggered through the rest of the day with my eyes half shut.

Everything tested fine, but celiac.

Going gluten free changed my whole life, but slowly. It took many months for the fatigue to lift, as well as iron and vit D to correect deficiencies. I know what you mean about barely being able to hold your head up! I felt like I was dying.

Be sure to get copies of all the labs that your doc did, and post them here. We will tell you where to go next. Have you had any gastro symptoms? Most docs are only aware of diarrhea as a celiac symptom.

Don't start the diet yet, but yes, I do think gluten is likely to be your problem.

[sapereaude]

Fatigue and ADD were my major complaints for 30 some years. It took 60 mg of Adderall, twice a day, just so I could barely function. I slept 16 hours a day and staggered through the rest of the day with my eyes half shut.

Everything tested fine, but celiac.

Going gluten free changed my whole life, but slowly. It took many months for the fatigue to lift, as well as iron and vit D to correect deficiencies. I know what you mean about barely being able to hold your head up! I felt like I was dying.

Be sure to get copies of all the labs that your doc did, and post them here. We will tell you where to go next. Have you had any gastro symptoms? Most docs are only aware of diarrhea as a celiac symptom.

Don't start the diet yet, but yes, I do think gluten is likely to be your problem.

Yes, I need to ask for copies I haven't done that with this doc. I have had some gastro symptoms, but they never seemed like a huge problem. Every so often I will get a sudden bout of diarrhea which seems to be something I ate, like my body is trying to desperately purge it. No fever or other symptoms, no one else gets it, so it isn't a food poisoning issue or a virus. It usually lasts an hour maybe and then its done. My stomach does hurt almost all the time, and often it hurts bad when I eat first something in the morning (that has been happening a long time - before all the medications). I have had some blood in the stool or on wiping, but I assumed it was more of a hemorrhoid-type issue - it was always bright red and never very much. I also do often have bad gas pains. The totality of those symptoms never seemed bad enough to pursue with my doctor. The fatigue is what has pushed me over the edge - it is reaching a debilitating state. Much of these gastro symptoms I have brushed off as probable side effects of the medications I'm taking, and I think my doctors have done the same.

[MitziG]

Bingo. Same as me. I always assumed I had a "touchy stomach" but my occasional cramping and diarrhea were always short lived and didn't cause me too much of an issue, so I never mentioned it to a doc. But the fatigue...my gosh...I begged them to find out why I was so freakin exhausted, I knew there HAD to be a reason...and they just kept giving me antidepressants.

It was only when my 8 yo was dx with celiac that the rest of us got tested and I finally got my answer...and my life back!

[1desperateladysaved]

Oh, years of fatigue which won't go away? I am so glad you are exploring this to help your health. My Story is in the blog section. I suppose you are trying to live as if nothing is wrong inspite of the fatigue. I hope you find a root cause and begin on the road to health.

[sapereaude]

Oh, years of fatigue which won't go away? I am so glad you are exploring this to help your health. My Story is in the blog section. I suppose you are trying to live as if nothing is wrong inspite of the fatigue. I hope you find a root cause and begin on the road to health.

It's very hard, because I'm an outgoing person and so when talking to folks I can rally - I don't seem tired, because I'm an animated speaker, etc. But when I sit down to get something done, or try to do housework, I just can't. It's aggravating.

I decided to heck with this crap - I made an appointment at the Beth Israel Celiac Center. I'm tired of futzing around with people who may or may not know less than I do about something. I am just going to go right to the experts and they can tell me. That way if its something else I can really feel like I've properly ruled it out, not gotten one misguided negative blood test.

[nvsmom]

Hypothyroidism symptoms are almost the same as celiac, and I personally have found the fatigue from that worse than the celiac, but that's just me. The two diseases are strongly linked.

I would suggest getting your TSH, T4, T3 and TPOAb levels checked. If TSH is even a bit high, and T4 and T3 are normal to low, that could be causing your problem too. TPOAb tests for thyroid peroxidase antibodies and indicates Hashimoto's disease.

Hope you feel better soon.

[sapereaude]

Hypothyroidism symptoms are almost the same as celiac, and I personally have found the fatigue from that worse than the celiac, but that's just me. The two diseases are strongly linked.

I would suggest getting your TSH, T4, T3 and TPOAb levels checked. If TSH is even a bit high, and T4 and T3 are normal to low, that could be causing your problem too. TPOAb tests for thyroid peroxidase antibodies and indicates Hashimoto's disease.

Hope you feel better soon.

I have had my thyroid tested so many times. My TSH levels were pretty much smack dab in the middle of the reference range last time I had them tested. I might pursue that too if this road doesn't help.

I missed the call from my doctor's office friday afternoon, they said on the voicemail my labs came back, Vitamin D was still low (it was only a few days after the previous test) but everything else was 'normal'. I need to call monday and make them send me the actual results, since I don't even know what test they ordered for celiac. I'm beginning to despair as this fatigue is getting unbearable. Last night I slept 12 hours and napped one hour and was very tired all day.

[amahones]

So I've been battling a myriad of health issues for years. In the last five years I've had worsening depression, anxiety & ADD, which I now take medication for. Fatigue has crept up, it comes and goes but I'm now what I'd call extremely fatigued about a quarter of the time and somewhat fatigued 1/2 of the time. I never had allergies until a few years ago, but I developed allergies to dust mites, cats and dogs a few years ago and recent retesting now has me allergic to a ton of stuff (weeds, etc) that I didn't test positive for two years before.

I often have stomach pain, but I attributed that to the medication I'm on. (Welbutrin, Zoloft, Concerta) I occasionally get random diarrhea, but it isn't constant. My menstrual cramps are progressively worse and periods are wonky. I have started bruising easily. I often feel foggy and my memory has gotten progressively worse.

I was completely flattened fatigue wise in March, and a slew of blood tests found me positive for 'mild anemia'. I couldn't believe it was only mild given how I felt - it was physically painfully tired to even just sit and do nothing. Holding my head up was taxing. My Vitamin D was normal, but 'on the low' end. I started iron supplements and started to feel better, but not 100%. The fatigue came and went, but it clearly was not gone. I switched doctors and repeated the bloodwork, my blood counts were normal, I was no longer anemic, but my Vitamin D was low (20 ng/mL), so I continued the iron and added vitamin D supplements. Still tired after two months, I went back to the doc, repeated the Vitamin D & hemoglobin/hematocrit. Vitamin D was LOWER, now 13 ng/mL, rest was normal.

Yesterday, Doc prescribed megadose of Vitamin D (50,000 units 1x week). While she was off ordering tests I googled Vit D deficiency and celiac came up, I asked her to add that test to the bloodwork she was ordering (repeat CBC and Vit D). I am not sure which test she ordered, I don't know if it was a panel or just a single test, I remember IgA being on the sheet, but of course that is in the name of all the tests. Hopefully I'll hear back tomorrow or Monday as to the results (anyone know how long those test usually take?)

When I look up Celiac symptoms I feel like they fit me like a glove - it would explain sooo much of what is going on. However, I'm also reading how they can have false-negatives and how you can be gluten-sensitive and not true celiac, etc. I'm wondering if I should pursue this further regardless of the test results? If they come back negative would you consider pushing for a biopsy and/or further blood/gene testing based on my symptoms? I think regardless of what the outcome of whatever I do end up doing is, I'm going to try a gluten-free diet to see if it helps, but I need to do all testing before I do that. Who would you see for this? A gastroenterologist? So far this has all been my primary doctor. Thanks for the help

I would ask for a copy of the results once you get them. It took me almost a week to receive the Celiac panel results from my GI doctor, and just a few days to get the result for a single test from my PCP.

I have had a lot of the symptoms you've had and sometimes, like you, my anemia is debilitating for some reason. I think a lot of the symptoms in general can be caused by Celiac but also other things.

I hope you find some answers soon.

[sapereaude]

I would be happy to hear any suggestions anyone has for other things (besides gluten) that could be causing these issues.

One thing that is concerning me is the bruising seems to be getting worse. If I end up scratching an itch too much, I have a bruise the next day.

[nvsmom]

Easy bruising could be a sign of platelet deficiency, it's called thrombocytopenia. Is your vitamin K okay? Did they check your platelet levels?

If it gets to be chronic and bad it's called idiopathic thrombocytopenia purpura or ITP. It can happen when your platelets fall under an autoimmune attack. It happened to me a long time ago and can get life threatening without treatment (but it's very rare so try not to worry).

Thrombocytopenia is also linked to Lupus, which is an AI attack on multiple organs. This could fit your symptoms too but it's a rare disease.

Best wishes. I hope you find answers.

[sapereaude]

Easy bruising could be a sign of platelet deficiency, it's called thrombocytopenia. Is your vitamin K okay? Did they check your platelet levels?

If it gets to be chronic and bad it's called idiopathic thrombocytopenia purpura or ITP. It can happen when your platelets fall under an autoimmune attack. It happened to me a long time ago and can get life threatening without treatment (but it's very rare so try not to worry).

Thrombocytopenia is also linked to Lupus, which is an AI attack on multiple organs. This could fit your symptoms too but it's a rare disease.

Best wishes. I hope you find answers.

I don't think we've checked my Vit K specifically, but the doc ran a CBC and I believe that includes my platelet count and that came back 'normal' (again, I haven't gotten the specific numbers) I've seen lupus come up in a few of my attempts at figuring out my symptoms. I guess I hadn't considered it as seriously because I don't have as many of the primary symptoms (face rash, fever, joint pain), but I am keeping it in mind.

So, I have my appointment at BIDMC in a month, so I figured I had better gluten it up until then to give myself the best chance of getting a good answer. I am making sure I eat 4 pieces of whole wheat bread every day. Yesterday I had that and I ate a bunch of crackers. I was looking at threads on this forum about the DH rash, just thinking to myself 'Well I don't have anything that sounds like that'. Then I got up from the couch and something on my butt/back of my leg hurt, when I check it out I have a small patch about 1.5" in diameter of red bumps that look suspiciously like DH. Nothing on the other side, well maybe a bump, but I'm also pretty positive that I didn't have this the day before and I don't have a lot of spots elsewhere. We'll see if that develops further I guess. I am going to try calling BIDMC every few days to see if any earlier appointments have opened up too.

I'm starting to see what people on this forum are talking about with respect to family members and support etc. My family all looked at me like I'm crazy when I told them I think it might be celiac. Including my brother who says he hasn't had a solid BM in 5 years, but its colitis (confirmed by a GI through a colonoscopy apparently). I asked him if he was tested for celiac and he said yes, but who knows how long ago and with what tests. I wasn't saying I am sure I have it, just that it seems like a possibility.

[kittty]

So I've been battling a myriad of health issues for years. In the last five years I've had worsening depression, anxiety & ADD, which I now take medication for. Fatigue has crept up, it comes and goes but I'm now what I'd call extremely fatigued about a quarter of the time and somewhat fatigued 1/2 of the time. I never had allergies until a few years ago, but I developed allergies to dust mites, cats and dogs a few years ago and recent retesting now has me allergic to a ton of stuff (weeds, etc) that I didn't test positive for two years before.

The mental health side showed up before the GI symptoms for me. I was dealing with anxiety and depression for many years, getting steadily worse, before the constant diarrhea became a problem. Like you, it started with occasional D after eating, but became more frequent very gradually. I don't know when the fatigue started, but it definitely got worse as the D got worse.

When the doctors were throwing darts at the wall trying to figure out what was wrong they ran an allergy test, and I also showed up with dust mite and cat/dog allergies which had never been there before. That's very interesting that you had exactly the same allergies show up, and I'm wondering what the connection could possibly be. Perhaps it's something to do with the autoimmune reaction to gluten.