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lvpriest

Please Help - At My Absolute Wits End!

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Hi all,

I'm at my absolute wits end and really hoping you incredibly knowledgable and supportive lot might be able to help me out.

Brief backround - stomach issues since very young. Bloating, excessive d, and for the longest time have had no idea why. After a period of immense stress about a year ago, was forced to take a day off work with the most catastrophic stomach pains and D I have ever, ever experienced. For no rhyme or reason (i.e. it didn't appear that I'd eaten anything that could be food poisoned). From that day on, my stomach has been horrendous - I pooped every time I peed, yellow poop, bloating after eating anything, increased anxiety and depression(resulting in me being put on Cipralex), dry, red painful rash in my hairline - the works. Ended up being referred to a gastro who ran tests and celiac came back weak positive, which doc dismissed as negative, even though I told him I barely ate gluten anyway. Now referred to a dietician who is working with me on the FODMAPS diet.

Anyway, I have been off the Cipralex for about three months (and no longer taking the Colpermin prescribed by the gastro) and have cut out gluten and dairy (have been intolerant since a baby, mother revealed to me only recently!) and also trying as hard as possible to follow the FODMAPS.

Have been feeling a lot better - rash cleared, anxiety/depression gone, and generally, stomach is better. But the last few days, it's been utter hell and horrendous and I just don't know why. I have been eating NOTHING with gluten, or dairy, and cutting out all the triggery FODMAPs. But my stomach is so, so bloated and painful, awful stinking gas and really really constipated.

I just don't know what could be making this happen. I'm concerned maybe cross contamination is playing a part, but I'm worried that I'm making a mountain out of a molehill there, seeing as I haven't actually had a 'positive' celiac diagnosis. I can't be intolerant to everything - can I?

Please help - I just don't know what to do and it's really getting me down.

Thank you!

Lauren

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Celiac.com Sponsor (A8):

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Thanksgiving was a little over a week ago. Did you have dinner at family or friends homes? If so I would suspect CC. Did you have the dinner at your home and cook gluten food for others? You could have been CC'd that way. Do you eat at restaurants much? You could have been CC'd there. Is there something you are eating more of than before you started the diet? For example I overloaded on soy after diagnosis not realizing that I am also intolerant to that. It is not unusual for us to have other intolerances particularly soy and dairy. Do you take any script meds? Generics can change binders and a med you took safely at your last refill may not be safe any longer. Generics need to be checked at each refill. Have you changed to a new lotion or shampoo or other personal care product? If so check the labels and make sure your toiletries are gluten free. Do you have a significant other who eats or drinks gluten foods? If so a kiss could have gotten you. It can be hard to figure out what got us. I hope your feeling better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Yes, you could be intolerant of a number of things!! There are 8 COMMON allergens and then there's a unlimited amount of things you could be intolerant of on top of that. I kept a journal of everything that went in my mouth. I also had to determine the approximate amount of time it took for something to "affect" me. Everyone is very different. This is about you, not others. Personally, I typically take 1 1/2-2 days for things to really show up on me. After I determined that glutens became a problem to add to my dairy intolerances, I was still having problems. Keeping the journal for months and months led me to find I am intolerant of not only glutens and dairy, but eggs, nuts, rice and beans. After isolating those items I FINALLY STARTED FEELING BETTER! But it took lots of time, frustration, depression, anger to finally find the light at the end of the tunnel. I have learned so much from this forum....its invaluable. I have also learned that my years of dairy intolerance EXPLODED into all the other things at a time when I had a very stressful/traumatic situation in my life. I thought I handled it pretty well, but apparently my body was taking it harder. It can often lay dormant in one's body until the stress triggers it. Unfortunately, it doesn't seem to have an "untriggering" button!! : ) I would encourage you to give yourself time and journal, journal, journal and then start analyzing to see what patterns you find.

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The FODMAP diet for IBS is so restrictive, I suspect it is for people, some of whom I suspect just need to cut out GLUTEN proteins from wheat, rye, barley, and get their guts healed, and then they would be able to eat some or a lot of the other things on it.

Two of the biggest culprits that go along with celiac/gluten intolerance are lactose, milk sugar, or lactose and casein, the milk protein, and soy. Since it sounds like you are avoiding dairy, that leaves soy, but it could be anything else. Even such things as common gluten free substitutes such as corn, potato, tapioca, flax....

I have had some cross contamination problems this year, first when my husband cooked dinner, and every time I reacted, and we traced it back to a powdered granulated garlic imported from China (McCormick's brand too, which is supposed to be safe, boy, was I annoyed. tried cooking with fresh garlic again and NO REACTION, so threw it out), and then to a certain batch of hemp milk, which may have been safe before but could have been cross contaminated somehow because I was just miserable every time I ingested it. This is why I only use water for liquid when I bake, because otherwise these gluten-free nut milks with the hidden barley enzymes from the #$%^&#$%^& processing or sweetener have the potential to ruin large batches.

Fermentable Oligo Di Mono saccharides And Polyols, short chain carbs that are osmotic and fermentable.

Supposedly one eats nothing out of these and then after 6 weeks re introduces some, one by one, for a challenge to see whether or not they are a problem. You can see what happens if a dietician tells you to reintroduce wheat, for example, it will screw up everything else.

If you are eating large quantities of "something else" to make up for all the other food you are not, you are likely either getting cross contaminated or you are ingesting something else you have an intolerance to, in large quantities. Aren't the holidays fun ? :blink:<_<

These tests supposedly came back weak positive, and your parent says you were gluten and lactose intolerant as a child ?

You can't be just a little bit pregnant nor just be a little bit gluten intolerant.

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