What Else To Test For Or Investigate?

[birdie22]

I've been seeing my PCP for about 6mo now for symptoms of bloating (that causes discomfort right below my breast bone in the area of my diaphragm), distention, nausea, headaches, fatigue, heartburn, thigh aches, and canker sores. All of these come and go and seem somewhat cyclical usually corresponding to my monthly cycle with symptoms being worse around ovulation and feeling my best the week prior to my period. I've had celiac testing (ttg, total iga, dgp), wheat ige, ca-125 (ovarian cancer screen), thyroid screen, full CBC, full chem panel (liver enzymes, vitamins, etc). I've had an upper GI, abdominal CT, intravaginal ultrasound. Everything has come back normal. I'm not anemic or low on D or B. The upper GI didn't show reflux. The doc had me do an elimination diet (w/out much guidance from her on how to do it properly) back in Sept and I continued to elim gluten after that. I added gluten back in, then eliminated it again. This second go round I've been gluten-free for 3mos (w/ the exception of 1 intentional glutening and 1 unintentional). I haven't noticed much of any improvement. Because of the cyclical nature of my symptoms just when I think I'm feeling great and maybe onto something the next week is back to same old same old. Bloating is worst about a week prior to ovulation. Fatigue is worst about 4-5 days after my period. Heartburn peaks during my period. Canker sores happen once a month and last about 7 days.

I'm taking magnesium/calcium and D3 daily. I'm exercising regularly.

I have a follow up appointment with my PCP on Wednesday and am wondering what my next steps should be. Any suggestions on any additional testing or questions to ask? I'm not ready to give up on gluten being my issue but I don't want to miss anything else.

[birdie22]

Well I think I need a new PCP. I haven't been happy with her approach or the fact that she doesn't spend more than 10minutes with me anyway. I had a follow up today, told her I didn't see much progress and that I'm discouraged. She sent me away with a rx for levsin saying I probably just need that to help keep things moving and to just take as needed since my GI symptoms are sporadic. She didn't want to do any other testing (not even for h pylori or lactose intol or anything) nor refer me to a GI.

[ravenwoodglass]

Since a lot of the issues happen around your period have you tried talking to your OB/GYN about it? He/She may have some ideas. I agree it is time to find a new PCP. Some insurance companies will allow you to just call a GI doctor without a referral. You may want to check and see if that is the case with yours.

[ciamarie]

You might want to try eliminating soy, also, if you haven't already? Easier said than done, but I've even gotten pretty good at making my own mayo, though I think you can sometimes find a soy-free mayo too. Soy does have some estrogenic effects. Open Original Shared Link

[UKGail]

A couple of things come to mind:

You mentioned an upper GI - did they take any biopsies, or just have look around? Celiac is not usually apparent until tissue is examined under a microscope. Even if they did take biopsies, as you don't have antibodies, any villi damage is likely to be patchy, so they could easily have missed it.

Soy or other intolerances e.g. dairy, eggs, corn etc are a good idea to look at via elimination diet.

Have you thought about food allergy testing? It might be helpful, but isn't foolproof.

Do you have any other family members with celiac, or other auto-immune, or gynaecological disorders? Celiac in particular is strongly familial, and usually goes with other auto-immune conditions or sometimes allergies. Problems can travel in packs, and if you suffer from more than one condition it can hinder diagnosis.

You sound a bit like me, before I got really sick. I had mild problems for about 25 years before it really kicked off. I knew a bit about celiac from diagnosed relatives, and had been on a gluten free diet for a while after I first had health problems in my twenties, and later on in my early forties. With hindsight I experienced a slow increase in energy and wellness on both occasions, and didn't get obviously sick on re-introducing gluten foods again (I didn't stick to the diet for lifestyle reasons, and because I hadn't understood that it was a problem for me). However, on both occasions, my health continued to slowly decline again once back on gluten. It was very difficult to see this at the time, as I had no idea the effects could be so subtle and so varied. Eating gluten finally caught up with me in my mid-forties as my health began to fail in many areas, and after having many medical tests to rule things out, my rheumatologist asked me to go strictly gluten free to see if that nailed it. It did. I knew within a few days that this was the answer, and I continue to improve, albeit quite slowly, after 5 months. I tested negative to all the celiac blood tests, and gluten messed with my reproductive system too. I was told my periods had stopped because I was post-menopausal at 47, but my periods have restarted and have been regular on the diet. The hot flushes have stopped too.

I think the point from the above ramble is that if you are in the early stages of this disease or intolerance, you may not see a quick response to the diet. You may need to give it some more time, maybe keeping a diary of your symptoms, so you can look back periodically to see if there have been any changes.

One final thought, did you do the diet strictly, avoiding all possible cross-contamination? I didn't when I was younger, as I had no idea about it, even though I had relatives who were celiacs. If you weren't strict, then you would not have been able to fully realise the improvements the diet can bring.

Good luck!

[birdie22]

Since a lot of the issues happen around your period have you tried talking to your OB/GYN about it? He/She may have some ideas. I agree it is time to find a new PCP. Some insurance companies will allow you to just call a GI doctor without a referral. You may want to check and see if that is the case with yours.

My ob/gyn was in on it at the beginning because I thought my symptoms were related to my Mirena IUD. Had that removed and symptoms didn't resolve. OB/gyn had suggested exploratory laprascopic surgery to look at things but I wasn't ready to just delve into surgery w/out eliminating other things (had just started investigating this issue). But, maybe time to revisit her and see if she has other suggestions. And great idea about the GI...I think our insurance changed recently to not require a referral.

You might want to try eliminating soy, also, if you haven't already? Easier said than done, but I've even gotten pretty good at making my own mayo, though I think you can sometimes find a soy-free mayo too. Soy does have some estrogenic effects. Open Original Shared Link

I haven't eliminated anything else at this point. I'm trying to do a better job at tracking food and symptoms to see if there's any common trigger. I'll read up on that link. Thanks!

A couple of things come to mind:

You mentioned an upper GI - did they take any biopsies, or just have look around? Celiac is not usually apparent until tissue is examined under a microscope. Even if they did take biopsies, as you don't have antibodies, any villi damage is likely to be patchy, so they could easily have missed it.

Soy or other intolerances e.g. dairy, eggs, corn etc are a good idea to look at via elimination diet.

Have you thought about food allergy testing? It might be helpful, but isn't foolproof.

Do you have any other family members with celiac, or other auto-immune, or gynaecological disorders? Celiac in particular is strongly familial, and usually goes with other auto-immune conditions or sometimes allergies. Problems can travel in packs, and if you suffer from more than one condition it can hinder diagnosis.

I think the point from the above ramble is that if you are in the early stages of this disease or intolerance, you may not see a quick response to the diet. You may need to give it some more time, maybe keeping a diary of your symptoms, so you can look back periodically to see if there have been any changes.

One final thought, did you do the diet strictly, avoiding all possible cross-contamination? I didn't when I was younger, as I had no idea about it, even though I had relatives who were celiacs. If you weren't strict, then you would not have been able to fully realise the improvements the diet can bring.

Good luck!

The upper GI was just a barrium swallow w/ xrays. I have not had an endoscopy. No one in my family with any diagnosed celiac or other AI disorders. I wasn't strict with CC issues at first but I am more aware of it now. I am happy to continue to give the gluten-free more time. Thank you for sharing your story with me.

[frieze]

I would be wondering about endometriosis...

[birdie22]

I would be wondering about endometriosis...

Definitely something for me to ask about. I think my ob/gyn and PCP discounted it early on because I have regular cycles, no pelvic pain, conceived my 2 children very very easily, and am in my late 30s. But at this point I'm willing to ask again.

[birdie22]

Had another follow up with my PCP. She's recommending to just stay the course which is:

levsin as needed for abdominal discomfort that comes with bloating

phazyme/gas-x as needed for bloating

magnesium (500mg), D3 (2000mg) and B12 (100mg)

add a digestive enzyme (she didn't say what kind)

She wants me to track the incidents of my heart pounding/racing after a meal. Seems to happen most often at lunch when I'm at work. She said that it could be a drop in blood pressure as my body digests food. She also told me to watch out for tight waist bands (they aren't) and large meals (they aren't).

She wouldn't do celiac genetic testing because my blood screen was negative and she didn't think it had any diagnostic value. I asked about it not for diagnostic value only but just as a piece of the puzzle. She said instead of the genetic test she'd refer me to a GI if I wanted. She said it as if she'd be throwing me a bone and humoring me by doing it.

The good news is that my fatigue is vastly improved as are the thigh/leg achiness. The headaches seem to be reduced in frequency. The bloating still happens and is still sporadic. The heartburn is mild and comes and goes. The heart pounding is also sporadic but mostly at lunch. At least I'm no longer waking up exhausted with a headache behind my eyes. For that much I am thankful. I'm sticking with gluten-free to see if it continues to help. I will consider the GI referral but at this point I'm not sure if I want to subject myself to 3-4mo of gluten for it to even be a beneficial referral.

[UKGail]

Sounds like your doc doesn't really think your issues are related to gluten. However, although both you and your doc need to be alive to possible alternative explanations, everything you mention above is very similar to my experience of gluten intolerance. Not many docs are familiar with the extra-intestinal symptoms of gluten intolerance, and they rely on the blood test for initial diagnosis as they have been told that it is highly reliable. In practice however this seems not to be so. with celiac specialists commenting that they regularly see both confirmed celiacs with no antibodies and non-celiacs who have a clear improvement of their celiac-like symptoms on a gluten free diet.

Anyway, rant over. I hope you continue to improve on your diet. BTW I now take all the supplements your doc mentioned to you, and find them very helpful.

[dilettantesteph]

I find that glutening symptoms are worse when I am having my period.

You could keep things really simple by eating only produce and meat. Eliminate the major allergens and keep a food/symptom diary. Only eat a few types of food at a time and try to figure out some pattern. Try to keep changes to one a week to give yourself a chance to notice reactions to the foods.

That is what has worked for me.