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Do Anyones Symptoms Go In Cycles?


LyndaCanada

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LyndaCanada Rookie

Hi everyone

I haven't posted in a while because I've been feeling really good.... until today that is!:(

I had my biopsy last Monday. The doctor had told me to eat lots of gluten before it which i was really worried would make me sick. I actually wasn't that bad, just really constipated whereas my problem before was always severe diarrhea. So after the biopsy the doctor told me that I could continue the gluten if I wanted until they knew for sure the results of my biopsy. I did have a previous colonoscopy biopsy that suggested Celiac in December but my blood test was negative so that's why they decided to do the 2nd biopsy.

Anyway, for almost 2 weeks, I've been feeling really well, absolutely no diarrhea and continuing to eat gluten-free diet but then, all of the sudden I have diarrhea again this morning!!

I've gone 3 times in about a 1 hour period!:( I'm so disenchanted. I know this is going to take time but does anyone elses bodies go in cycles like this? I don't understand what is causing the diarrhea? I guess maybe i ate more cheese and perhaps I shouldn't have? I've really been watching the dairy products but I was so hungry this weekend?

Sorry, kind of a longwinded way of asking a question but does anyone else find that even on the gluten-free diet you still have relapses of your symptoms even if you continue gluten-free?

I just want to try to understand what my body is doing!! I know everyone's symptoms are different but just hoping I could get a little reassurance I guess. I've been gluten-free for probably almost a month except for about a 4 day period before my last biopsy where my dr. advised me to eat gluten before it.

Any insight or similar experiences? I'd sure appreciate the help!!

Thanks!:)

Lynda


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Noel1965 Apprentice

Hi Lynda - I can relate Lynda.....I finally got to see my specialist again last week after being told one year ago that I had celiac disease. For an entire year I stayed gluten free and was somewhat obsessive about cross contamination. My symptoms have not improved at all. I have been very frustrated with myself wondering what I am doing wrong and what have I been missing. One thing that has always puzzled me is how most of the people on this site say that they can tell when they have had gluten by a reaction. I feel sick continually and especially after I eat - regardless of what it is. I was told last week that I also has IBS and that is what is causing my symptoms - not the celiac disease. I was given a prescription that I have not yet started taking but I have hope again that maybe things make sense. I'm not sure if any of this will help you, but keep in mind that often there are often multiple diagnoses that can confuse us!! Hope you get back on the "good track" soon.......Noel

aikiducky Apprentice

There are several reasons why you might get symptoms again on the diet.

First of all, like Noel said, there might be something else going , not instead of, but on top of the celiac.

Second, many people find out that they also are sensitive to other foods, like in my case I get exactly the same symptoms from cow's milk as from gluten, and I have to be just as careful with it, too. Other possible culprits could be for example soy, or eggs, or some of the gluten free grains, legumes, nightshades...

Third, it takes time, probably more time than you'd like, to completely heal. I wasn't really fine until two years into eating gluten free.

Fourth, we all swear up and down that we're completely 100% gluten free but we all make mistakes, I know I've made plenty! So it is possible that there's some gluten sneaking in somewhere where you'd not expect it, in makeup for example or a lotion etc. Have you replaced your toaster?

Anyway, it could be any or all of the above... hope that helps!

Pauliina

Cynbd Contributor
Hi Lynda - I can relate Lynda.....I finally got to see my specialist again last week after being told one year ago that I had celiac disease. For an entire year I stayed gluten free and was somewhat obsessive about cross contamination. My symptoms have not improved at all. I have been very frustrated with myself wondering what I am doing wrong and what have I been missing. One thing that has always puzzled me is how most of the people on this site say that they can tell when they have had gluten by a reaction. I feel sick continually and especially after I eat - regardless of what it is. I was told last week that I also has IBS and that is what is causing my symptoms - not the celiac disease. I was given a prescription that I have not yet started taking but I have hope again that maybe things make sense. I'm not sure if any of this will help you, but keep in mind that often there are often multiple diagnoses that can confuse us!! Hope you get back on the "good track" soon.......Noel

Hi Noel,

I was wondering... How were you diagnosed with IBS?

I have been wondering lately if I have IBS too... after being diagnosed with celiac disease I wrote off the previous IBS conclusion, BUT, I started back to school this week and was not feeling well all week. I had D for the first time in weeks, and took immodium, I even had to run out of my first class on Monday in the first 10 minutes of class... I hate that!

I have been obsessively careful too, so I was thinking that IBS may be playing a bigger role than I had hoped, esp since starting back to school for a new semester is always a little stressful. But if it is IBS, it definitely feels the same as being glutened.

I to feel crampy after almost every single meal, but usually that's it, but I do wait for the other shoe to drop. I have been gluten-free for over 9 weeks and felt great the first couple of weeks, and now I seem to be having more problems again. It seems like, as others have said, that after a while our bodies can react to smaller amounts of cc.

key Contributor

Cindy,

I too seem to have some IBS issues besides the celiac. I figure it is either that or cc from somewhere. It is very frustrating. I will be doing great for awhile and then bam. I don't really have an answer for you. My guess is that after going gluten free maybe we have other intolerances or it is cc. I am trying to avoid dairy and beans for now. We will see. That is hard for me, because I am vegetarian. I have always been vegetarian, but my diet is so limited, I am tempted to start eating some meat.

Take care,

MOnica

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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