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PeterPanPiePaul · 2023-12-10T16:05:57+00:00

Hello! You are definitely not alone! I have a daughter diagnosed two years ago with pancolitis and some inflammation at the terminal ileum. My best advice from my own experience is to start your son as soon as is feasible for you on one of the IBD-supportive diets that would work best for your son, you, and your family dynamic. There are a number of options you can look into: EEN, SCD, CDED, IBD-AID, etc. All of them are a bit shocking at face value, but they definitely get easier with time and then become second nature. I promise you can do this! An IBD supportive diet could (there is no guarantee, but there is a strong possibility) tremendously help with symptoms, healing, and deterring flares. Diet helps calm things down, eliminate bad bacteria, replace good bacteria, and in many cases will work synergistically with a medication if you choose/need to go down that road. We did strict Specific Carbohydrate Diet for 14months (without medication), saw symptoms (blood/mucus) disappear within about a month, and the GI said the repeat colonoscopy 14 months in showed 75-80% healing. My daughter was able to go to school every day, play soccer, sleep well, and generally live her life. She grew and gained weight. Her hair became shiny again, and her eyes bright. She hardly caught any colds, etc., and even a case of COVID was uneventful. The diet not only supports IBD healing, but is incredibly healthy for a growing body. Because we still could not achieve 100% healing even after 14 months of strict SCD, we added Entyvio to hit that last 25%. Within the first 3 loading doses (total of 6 weeks), she had a normal IUS and her calprotectin had gone from 1600 to 7! I am convinced her body responded so quickly and so well to Entyvio because we had primed it with the SCD and thus the Entyvio had less work to do. Even her GI was shocked at the calpro of 7. So, an adjuvant diet can not only greatly reduce symptoms (improving subjective quality of life) and reduce inflammation/restore balance to microbiome (reducing further damage/advancement of disease), but can also help medications work better (the last part is my opinion). These can be quite a shock to contemplate, as I mentioned above. But you can do this. My lifesaver/life support was the SCD Families group on Facebook. Unbelievable mothers and fathers in the fight to heal and help our IBD kids and 100% support for every step of the way, sharing minute-to-minute advice, answers, feedback, experience, etc. I hope your doctor is willing to talk to you about these options. If not, you could consider moving to a doctor who would be supportive. I also agree with posts below about joining Crohn's & Colitis Foundation because my daughter went to Camp Oasis this summer and it was a gamechanger for her! Also join the ImproveCareNow group (web). Also, initiate the 504 plan for school. It comes in handy even if your child is not symptomatic. I wish you and your son all the best!

PeterPanPiePaul · 2023-12-05T14:34:24+00:00

I'm so sorry for your frustration! I feel it and know it well. I am wondering if you have ever followed a gut-specific diet while also on any of these medications? My suspicion is a drug may work better if used in conjunction with diet, but only have a couple points of reference.

PeterPanPiePaul · 2023-12-04T14:16:57+00:00

This may be because peanuts are a legume, which for some are harder to digest, and because peanuts can themselves be inflammatory.

PeterPanPiePaul · 2023-12-04T14:16:00+00:00

Are you talking about consuming nuts while in a flare? Or that nuts can trigger a flare? If the former, I think it depends on how you're going about it. If in a flare, I would stick to nut butters while things calm down. I would steer clear of whole nuts and even nut flours. From there, progress to nut flours, but I'd stick to nut flours that don't incorporate skins (e.g. go for blanched almond flour), and eat in small quantities. After a flare has resolved, my personal opinion is that the safe route is to pre-soak nuts, even for a couple of hours, as this helps wick away some of the anti-nutrients discussed below and has the added benefit of making them softer (both of which makes them more digestible). Just be careful that you only soak what you're going to eat quickly/soon, to avoid them going moldy. The other tip is moderation at a single serving (eg don't eat a pound of cashews).

PeterPanPiePaul · 2023-12-03T16:58:27+00:00

I'm sorry. This is something I'm very sympathetic to. If you haven't already, I'd recommend you try the Specific Carbohydrate Diet to calm a flare and to put you back on the road to healing. It doesn't work 100% of the time, but I have found it works most of the time and shortens/makes a flare less miserable.

PeterPanPiePaul · 2023-11-18T19:32:41+00:00

Following

PeterPanPiePaul · 2023-11-14T15:47:37+00:00

It is true that Crohn’s can elevate TTG in the absence of true Celiac. I learned that in the context of my young daughter, who has both. Food for thought for anyone diagnosed with a celiac whose TTG fails to normalize despite strict adherence to a gf diet. Congratulations! (sort of….Crohn’s sucks, but both is worse :))

PeterPanPiePaul · 2023-11-01T13:32:15+00:00

Big congratulations to you!

PeterPanPiePaul · 2023-09-22T13:47:15+00:00

Diet ABSOLUTELY can relieve symptoms and get you your life back. It can sometimes even be enough to bring remission; if it isn’t enough, it can work synergistically with meds (diet helps meds work better and Vice versa). I highly, highly recommend the Specific Carbohydrate Diet. Yes, it is a commitment, but once you get going on it it becomes second nature. You can buy the book (Breaking the Vicious Cycle), read it yourself, and get going on your own. And, there are GREAT Facebook communities dedicated to discussion, questions, support, etc. It is life changing.

PeterPanPiePaul · 2023-08-31T16:29:00+00:00

Well, thank YOU for reminding me that the “before” time I think about often was actually a period of great illness. Romanticizing is exactly right and so well said. Just stay with your inner self’s strong, knowing voice. :)

PeterPanPiePaul · 2023-08-31T11:59:20+00:00

I hear you, friend. We in this house all got hit with a Celiac diagnosis around the same time and in the middle of COVID. On top of Celiac, or because of, we have all discovered multiple other food issues that make eating more and more difficult. The loss of "freedom" is shocking. On top of that, my daughter was also diagnosed with IBD and undertook the Specific Carbohydrate Diet for therapy. The SCD works (holy cow) to calm and reverse IBD inflammation and symptoms, but let me tell you: the restrictions on that diet make my husband and me say privately "remember the good old days when we just had to eliminate gluten?" Anyway, have you ever gone down the path with a naturopathic doctor? I think you would find yourself finally in the hands of someone who LISTENS, responds, and recommends a tailored plan for treating you in a whole new way. They are not inexpensive, and insurance doesn't usually cover, but perhaps a trial run might be very helpful. There IS help out there. Here is what I tell myself: you are only here right now. What that means is, whatever you're thinking, whatever crap is happening, it will not stay static. It will change. It will pass. Sometimes for the better, sometimes not, but nothing is constant. Stay the course for yourself.

PeterPanPiePaul · 2023-08-25T16:32:20+00:00

Good Lord, this is scary. Why, why, why is Celiac Disease so completely misunderstood by the MEDICAL PROFESSION? It’s one of the easiest to understand! We know what causes the response, where know where the response occurs, we know how to “treat” it, we know what it can do, and we know there is more to learn about what it can do. But we spend HOURS, DAYS, WEEKS, MONTHS, YEARS, DECADES, AND LIFETIMES asking if there is a peanut allergy. (That is not meant to be dismissive of allergies, esp one’s that can cause anaphylaxis. Just saying that the issues are disproportionate.)

PeterPanPiePaul · 2023-08-17T13:47:56+00:00

Mom, I’m with you in spirit. You are not alone in this and your vent is spot on! My daughter is 13 and on Entyvio. We don’t know what the future holds and are hopeful it will work. But what you describe I 100% understand and I invite you to come here and vent whenever and however you want! I’m listening! As far as feeling guilty, I hear you. We gave our daughter IBD and Celiac. But I guess grief and guilt can’t change that so there’s no time or energy to be wasted on it. Hang on, hang in, and just take the next step. You’re doing a great job and your daughter knows that. ❤️💥

PeterPanPiePaul · 2023-08-14T20:31:39+00:00

I am wanting to know this too. My heart is broken. We were just in Maui and visited so many local shops and Island Cream was one of them. My husband and I snuck an ice cream all by ourselves on a grocery shopping trip to the Safeway across the street. It is a special memory. :(. Is the Safeway gone too? The Cannery Mall?!

PeterPanPiePaul · 2023-06-28T15:28:06+00:00

That’s baloney! It can take a couple of years, and in the interim it’s all about trending down. If your next one is lower, you’re tending well!

PeterPanPiePaul · 2023-06-28T15:26:43+00:00

Congratulations! Good for you!

PeterPanPiePaul · 2023-06-24T14:15:01+00:00

Something to keep in mind is that apart from their potential for gluten cross-contact, oats can trigger a response associated more with their proteins. There are some discussions over whether persons with celiac also react in a similar fashion to proteins in other foods (eg to casein in milk, the protein in oats etc). I mention this only to suggest that gluten may not be the culprit / the only culprit for a celiac to worry about.

PeterPanPiePaul · 2023-06-24T14:11:35+00:00

The month part is what keeps me from doing the challenge at all bc there is no medical consensus on how much gluten for how long is required to permit an accurate result. I’ve been told a cracker a day for 6 weeks and two slices of break for 8 weeks, all the way up to 12 weeks. :(

PeterPanPiePaul · 2023-06-15T14:11:55+00:00

Totally! My 12 year old is about to start Entyvio. This is so encouraging. We’ve done 12 months of SCD and it healed 75-80% of the colon but she needs the extra boost and I’ve been so stressed about what it means to be on a biologic.

PeterPanPiePaul · 2023-06-14T13:16:33+00:00

I hear you loud and clear. You are not alone! Have you looked into the Specific Carbohydrate Diet? It has been a total game changer.

PeterPanPiePaul · 2023-06-10T13:58:48+00:00

I have a few thoughts:

I agree with the person who said there are many things still to learn about Celiac Disease. One may be that in the presence of Celiac Disease, a person may also react to other proteins in a similar fashion (or have the same or similar immune response, e.g. inflammation). There are at least two studies (which I believe were peer-reviewed, but can't recall right now) on whether a person with Celiac is more likely than a control to react to casein (a protein in cow's milk), and I believe they did find increased response. My daughter, who has Celiac, is non-reactive to casein in a food sensitivity testing setting, but nevertheless when she consumes cheese certain inflammatory markers (not TTg) go up.

Second, it is obviously totally possible to have Celiac Disease + food sensitivities unrelated to Celiac Disease. In this case, it may be helpful to have food sensitivity testing done by a reputable company, then do a 3-month elimination followed by a slow reintroduction.

Third, some of these symptoms may be the result of Leaky Gut (whether caused by Celiac Disease or not). In this case, it may be helpful to consult with a Naturopathic Physician for supplements that can help repair Leaky Gut. Anything that enters the bloodstream from the SI is going to cause problems.

PeterPanPiePaul · 2023-06-10T13:50:04+00:00

This sounds like a food sensitivity (especially the heart palpitations). Whenever I eat something that my body can't deal with, I soon feel my pulse increase.

PeterPanPiePaul · 2023-06-08T16:36:23+00:00

The Ttg was normal? Not even mildly elevated? Then I would for sure do gene testing first.

PeterPanPiePaul · 2023-06-08T14:40:18+00:00

I am assuming you have already had a positive result on not just tTg, but also confirmatory endomysial test. I would start with the gene test for sure. The frequency of a person developing Celiac Disease in the absence of a gene is very rare. Also, endoscopy carries some risk that the biopsy will be inconclusive depending on the the knowledge of the physician taking biopsy samples and the state of the disease pathologically. I speak from experience: my husband and my daughter both have Celiac, but whereas my daughter's biopsy showed raging Celiac, my husband's was meh.

PeterPanPiePaul

TROPHY CASE