HELP! Postpartum flare up

[constantd]

Hello all -

This is only my second post to this site since I seem to have my MC *fairly* under control. I am the Veterinarian who posted a while back about withdrawal diarrhea from discontinuing my pepcid. Anyways, i've got a whole different and new problem. I have a wonderful and new 4 month old daughter in my life! It took my husband and I YEARS to conceive and I am 99% sure that it was probably because of my autoimmune issues and MC. I went on entocort for the first time last January and low and behold I finally fell pregnant! Coincidence..... I think not. But I digress.

So now that my daughter is 4 months old I am suddenly facing a HORRIBLE flare up. During Pregnancy I had virtually no diarrhea and everything was fabulous (as is often the case for autoimmune conditions during pregnancy). But now 4 months into raising a child (which has been so rewarding but also very stressful and tiring), I find myself with an awful flare. My biggest concern is the amount of weight I am losing from this while also breastfeeding. I am down to my lowest weight EVER of 105 pounds. And I am 5 foot 6 inches. It's NOT OK. My daughter is 100% breastfed and we won't be introducing solids until 6 months. Not surprisingly we found out she has a milk protein allergy when we had to give her formula in the beginning. So formula really is out to the question (unless we give her the hydrolyzed protein formula, which we tried... and she HATED). It's just that I know breastfeeding means I need 500 more extra calories daily and I am already strapped for calories and losing SO much weight. I just ordered the Enterolab supplies and will know my results in about a month, but in the meantime I am avoiding gluten, dairy, soy , and eggs. I pretty much avoid gluten and dairy anyways. I probably have lots of other things I am sensitive to but just don't know yet.

I am looking for any ideas here. I can't go out and take a bunch of medications because my daughter is breastfeeding. But maybe I should switch to formula so I can try different meds??? It's just that she is so used to breastfeeding and loves the comfort it provides, etc., that I think switching to bottle feeding with formula will be very hard on her (and me). Or take low dose budesonide to see if it helps?? This is probably a unique situation and hasn't been asked on this forum before, so I'm not expecting much in the way of answers. I take 5,000 units Vitamin D daily along with claritin and a probiotic. And lots of immodium! And levothyroxine for my Hashimotos, and occasional pepcid for GERD.

Oh - and one other thing. I've had this disease for what seems like forever (13 years) and never truly gone into real remission. BUt this time around the exhaustion and fatigue is OUT OF CONTROL. Believe it or not i am getting adequate sleep at night. My daughter sleeps 12 uninterrupted hours at night god bless her soul (knock on wood)! Any ideas on why the exhaustion is so bad this time around?? I will admit the stress of new parenthood might have something to do with it, but I dunno. Thanks for any input in advance and I hope everyone is experiencing some remission and/or NORMANS!!

[tex]

Hi,

Sorry that your symptoms have returned so soon. Usually MC remissions associated with pregnancies will remain in effect until lactation ceases.

This is probably a unique situation and hasn't been asked on this forum before, so I'm not expecting much in the way of answers.

Please allow me to surprise you with a response that I am reasonably confident applies to your situation. I have a hunch that you are magnesium deficient, and as the deficiency has become more serious it has resulted in the premature termination of your pregnancy-induced remission. Here's my logic:

For one thing, most people in this country are magnesium deficient, and anyone who has a IBD is especially likely to have a magnesium deficiency because the malabsorption issues associated with IBDs tend to cause various mineral and vitamin deficiencies, including magnesium. And in addition, many medications (especially antibiotics and corticosteroids) deplete magnesium. Why does that matter? Because as you are surely aware, unused histamine in the body is normally purged by diamine oxidase (DAO) enzyme. DAO levels increase by approximately 500–1,000 % during pregnancy in order to protect the fetus from bioactive histamine.

But unknown to the medical community (at least this remains unrecognized by the mainstream medical community), many/most of us have mast cell/histamine issues when our MC is active. The basic problem is mast cell activation disorder (MCAD), but of course the association of reduced DAO levels compounds the problem for many of us. IBDs are known to case DAO deficiencies and our experience on this discussion board shows that this certainly applies to MC. My personal theory is that the DAO decline and MCAD issues associated with MC are virtually always due to undiagnosed magnesium deficiency (because virtually no mainstream clinicians understand how to test for magnesium deficiency, so they always mistakenly order the useless blood tests, which virtually always incorrectly rule out a magnesium deficiency). The point is that those blood tests will only detect a magnesium deficiency after all of the muscle cells of the body have been purged of their magnesium reserves as the body struggles to maintain a normal serum magnesium level. The test results will be normal even though the body may be starved for magnesium. And here's the clincher:

Magnesium deficiency has been shown to cause elevated histamine levels (associated with a drastic decline in DAO levels). Here's a reference based on rat responses to magnesium deficiency:

Specific change of histamine metabolism in acute magnesium-deficient young rats.

Therefore my theory is that your DAO level has collapsed prematurely due to increasing magnesium deficiency, resulting in a loss of pregnancy-induced remission from MC symptoms. IOW, I suspect that your symptoms are mast cell-induced, rather than T cell-induced (as defined for classic MC inflammation). I have a hunch that if you will boost your magnesium intake significantly (topically-applied magnesium works well, also), and minimize your intake of high histamine foods (and histamine-releasing foods), you will see significant improvement. You might find that a good daily H1 antihistamine for a week or so may also help to reduce your symptoms.

Of course such a premature relapse of symptoms could be caused by an abnormal (out of phase, or larger or smaller, or faster or slower than normal) hormonal change, also. I would be interested in hearing your thoughts on my magnesium deficiency/histamine/DAO theory.

Tex

[twirlitgirl]

I just wanted to say congratulations on the birth of your daughter , and hope things settle down for you to enjoy motherhood and your little miracle.
all the best to a speedy recovery from your flare.. many joyful days ahead watching her milestones, take care

[Gabes-Apg]

Congratulations on the arrival of your daughter

further to tex's response, the other suggestion i have is amino acids / increase animal protein. If you can do some home made bone broth and have soups and stews based on this, this will help with gut inflammation, gut healing and provide essential amino acids etc.

the other thing that will help is Vit D3, have you had your levels checked? do you supplement with Vit D3?

hope this helps

[tex]

Gabes, she's taking 5,000 IU of vitamin D per day. But I missed the mention of Claritin in her post.

My inclination would be to change the Claritin to Allegra or at least to Claritin Redi-Tabs, and skip the probiotic (at least until remission is achieved). The latest guidelines issued by the American Gastroenterological Association Institute (in mid-December, 2015) agree with my position to avoid probiotics when treating MC.

Recommendation 8. In patients with symptomatic microscopic colitis, the AGA suggests against treatment with probiotics over no treatment for the induction of clinical remission. Conditional recommendation, low quality of evidence.

http://www.gastrojournal.org/article/S0 ... 1625-X/pdf

Tex

[Gabes-Apg]

THanks Tex
I would still be interested in what the level is - even with regular supplementation the level can drop with various situations.

The other aspect is the pro-biotic - while you are inflammed, it may be making things worse. I would consider pausing it for now.

[tex]

Tex

[Lilja]

Hi,

Congratulations with your daughter!

I remember when I had my first son. I didn't have CC at that time, but I was so tired and completely washed out after birth. I couldn't lift my arms to brush my hair, and I slept as much as I could, between nursing and breast feeding.

Back then doctors used to measure people's B-12 levels, and especially in women who felt exhausted after having given birth. I was so B-12 deficient, that the doctor sent a nurse to my home once a week to give me B-12 injections for 2 months.

If it is hard to get to a doctor's office with the little one and the breast feeding and all, I would take some B-12 sublinguals (2-3000 mcg a day) and see if you get better. It's not dangerous to take B-12 even if you are not deficient.

And of course, I would follow Tex' and Gabes' advices.

Enjoy your new life as a mother

Lilia

[constantd]

Thank you all for the quick replies! Tex I definitely think you could be onto something with your magnesium deficiency and DAO deficiency theory. Heck, it doesn't hurt to supplement with transdermal magnesium so I will definitely give it a try! Interestingly enough I am heterozygous for the MTHFR mutation and therefore probably have lower levels of DAO as a result. I have always had hay fever and occasional weird hives/rashes for as long as I could remember. And as far as having my Vitamin D levels checked, I did a few years ago and of course they were low to borderline low since I reside in the great Pacific Northwest. EVERYONE has low vitamin D levels here (and we also see higher incidences of MS and inflammatory bowel disease....hmm.... coincidence?). So I'm pretty good about taking my Vitamin D. BUT I've never taken magnesium so I will definitely give it a try! It would make sense considering that when I get these flare-ups I start to get weird tingling and parenthesia in my legs, along with many other symptoms. And I guess the severe exhaustion is just par for the course? I'm not getting as much rest these days because of the fact that I have a 4 month old.

I am thinking about taking a lower dosed course of budesonide to see if this may help. At this point I just don't have time to wait it out with the constant breastfeeding. It's like I literally have a little parasite who is sucking every last drop of fat off of my body and depositing it on her own! (My daughter is pretty chunky, which is great but at the same time I would kind of like some of it back). It is hard to eat more calories when my appetite isn't great to begin with during a flare up. Ugh.

Couple of other questions: 1) what's the reasoning behind dropping the probiotic? Just too many supplements? and 2) Why should I change to a sublingual claritin? So that it is absorbed better? 3) Has anybody ever tried the DAO supplements and had success? and 4) It seems that when I get a flare up I will get nasal congestion and a scratchy cough. Is this probably just another histamine issue? It sounds and sort of feels like I have a cold except it never progresses into a full blown cold. Maybe it is just from being a rundown new mother?

Again, thank you all for your input. Having a flare up is hard enough alone. But I've learned that having a flare up with a new baby while you are breastfeeding might possibly be my hardest challenge yet. Gotta love this disease.

[tex]

Regarding the fatigue/exhaustion: That's a side effect of both MC and magnesium deficiency. Before I corrected my magnesium deficiency I had low energy and extremely poor endurance/stamina. When I tried to do physical work, I would very quickly run out of energy, get too hot, and have to sit down and rest way too often. That no longer happens. I'm still limited by my age (I'm not so young anymore), but I can now work at a level above average for my age, rather than way below average.

Couple of other questions: 1) what's the reasoning behind dropping the probiotic? Just too many supplements?

Our experience here among the membership (and this is supported by recent research related to Crohn's disease and UC) is that probiotics rarely provide any benefits during the recovery period. They do however cause symptoms to be much worse for many patients. For the rest, they make no difference. So why waste the money and risk jeopardizing recovery?

and 2) Why should I change to a sublingual claritin? So that it is absorbed better?

Sublingual isn't the issue. If I recall correctly, regular Claritin contains an ingredient derived from dairy that can cause many of us react.

3) Has anybody ever tried the DAO supplements and had success?

Very few have tried a DAO supplement, and I don't recall anyone posting that they could clearly see benefits. So the jury is still out.

4) It seems that when I get a flare up I will get nasal congestion and a scratchy cough. Is this probably just another histamine issue?

Yes, those symptoms are consistent with histamine issues, though they could possibly have other causes. Throat congestion often follows the ingestion of a food allergy (in contrast with a food intolerance). IOW, that's a result of an IgE-based reaction rather than an IgA-based reaction.

It sounds and sort of feels like I have a cold except it never progresses into a full blown cold. Maybe it is just from being a rundown new mother?

Stress can cause magnesium deficiency, and a lack of magnesium tends to magnify the stress reaction, worsening the problem. Magnesium supplementation can help to relieve both emotional and physical stress because it can affect dopamine metabolism.

You're most welcome,
Tex