Past The 3 Week Mark gluten-free...

[cshinaberry19]

I've been on a gluten-free regimen for over 3 weeks now and I am seeing ZERO change in my symptoms. It seems from what I have read on this forum and elsewhere that many, many people see some improvement almost immediately, or at least within a few days. Suffice it to say I'm feeling a little skeptical at this point.

I feel I can say with almost 100% certainty that I'm not getting hidden gluten. I didn't enter into this trial lightly... I spent a lot of time reading up on it as far as what I could and couldn't have. Before I started the diet, my husband (who's doing it with me for moral support) and I got rid of all the gluten-containing food in our kitchen. We boxed up and quarantined all plastic and wooden utensils and replaced it with brand new. We vacuumed out the cabinets, scrubbed out the fridge, scrubbed all the counters, replaced all the sponges... I bought gluten-free soap, shampoo, toothpaste, etc. I checked out all the medications I take and confirmed that they are all gluten-free. I bought gluten-free vitamins and supplements. I haven't eaten a single meal outside the house since I started the diet and I haven't eaten ANY prepared food. NO glutened food has come in this house since I started. I decided that whole foods were the way to go to minimize the chances of CC and hidden gluten, so pretty much all I've been eating is brown rice and vegetables, either fresh or frozen (the latter are just plain frozen veg - no manufacturer-added sauces or spices). I have been using some spices on what I eat, but we had ground them ourselves so I know they don't have any gluten added. I was a dietary vegan before starting the gluten-free diet, so I'm not eating any dairy - I know lactose intolerance is a big problem.

Any suggestions? I have some other health problems (mainly severe CVID) that could be causing my GI symptoms - I am just trying to rule out celiac. I know it can take many, many months for complete healing to occur, but I am thinking I should start feeling better long before then if the gluten-free diet is having an effect. So how long, from everyone's experience, should I give it before I assume that the problems I'm having are NOT because of celiac?

I cross-posted this to a couple different forums, so if you're seeing this more than once, I apologize!

[Guest nini]

it could be other food intolerances instead of gluten or along with gluten... since you seem to be very well aware of your diet and what goes into it, you should have a fairly easy time determining if it's other intolerances as well of or besides gluten.

I would say that in some cases three weeks is not enough time to see a difference, in children three weeks is usually more than enough time to see an improvement even if it's not 100%, but it may take longer in adults. I had good days and bad days for at least 6 months into the gluten-free diet, but I did also start to notice at least some improvement within the first few days.

I'm probably not answering the question though! I can't tell you if your problems are gluten related or not gluten related, I guess I would suggest to try giving the gluten-free diet a little more time, and if you still don't see ANY improvement at all no matter how subtle, then add gluten back into your diet and then eliminate other foods one at a time until you start to see a pattern.

and then if it doesn't appear to be food related, look at parasites, candida, and so on... do you know a good naturopath?

[penguin]

How were you diagnosed and how long were you sick?

[cshinaberry19]

How were you diagnosed and how long were you sick?

I haven't been diagnosed. I had the blood workup, but it didn't show anything useful because of the CVID. (My body is producing virtually no immunoglobulin because of the diease, so the test isn't a good diagnostic for me.) Biopsy is high risk for me, too, because of the risk of infection related to CVID, so I we're trying to dx by diet (or at least see what effect the diet has) and avoid the potential dangers of an invasive procedure. My medical situation is complicated. I have been very ill for about seven years. About six years ago I was dx with Chronic Fatigue Syndrome, and around the same time also dx with IBS. I was dx with the CVID last summer. CVID and IBS can both cause the symptoms I'm having - bloating, nausea, recurrent diarrhea, gas, abdominal pain and distention - but my gastroenterologist thought we should try and rule out celiac since there is a fair amount of overlap between patients with the other autoimmune illnesses I have and celiacs.

[penguin]

Eek! CVID is common variable immune deficiency, right? Sorry for the blunt language, but that sucks! That means you get all the fun blood plasma product medications, right? IVIG? Good thing students need money so badly that they'll sell their bodily fluids

All I can say is that I felt better for a week or so after starting, and then began to feel like crap all the time. It just takes time, and especially with your immune system, it may take longer. I'd go maybe 3 or 6 months before making any kind of determination of whether you're getting better or not.

There's a great support system here, welcome!

[Matilda]

..

[dionnek]

I was recently dx through a biopsy and blood tests - been gluten-free for almost a month now and no improvement (I actually feel worse - same old symptoms plus now I have constant headache and sinus problems, but that could just be a sinus infection nonrelated - I get those anyway). I would not give up. I am assuming I won't feel better for at least 3 months, maybe more, so will continue on this diet at least until my 6 month checkup to see if my intestines have healed. Actually, it is a much healthier life style - once you really pay attention to all the "crap" you've been eating, it is amazing how gross it is! Anyway, what I'm saying is don't give up yet

[jenvan]

Well, unfortunately IBS is commonly given to Celiacs as a primarily misdiagnosis--myself included. Celiac can definitely causes the symptoms you have been having. However, 3 weeks is not long for some Celiacs on the gluten-free diet. I would say I noticed improvement in bms after a few months, but it has taken over a year to notice improvement in my energy levels. It could take longer for you since you have CVID. I'm sorry for that--sounds very hard. I would honestly give it a few months to notice a change in stools...it can take that long. Has your doctor talked about doing a capsule endoscopy or would that be too risky too? It isn't a clear diagnostic tool for Celiac (as opposed to a biopsy), but sometimes there are typical patterns in the intestines of celiacs that can be observed via the capsule. It could also check for other GI distress, crohn's etc. Wish I had a clear answer for you! But at this point, more time might be it. Perhaps you might want to read the book Dangerous Grains--has a good discussion of Celiac and the connection with autoimmune issues.

[Nancym]

Probably the last thing in the world you want to do is give up more food but you might be like me and also have dairy problems. My Enterolab.com testing showed both gluten and casein sensitivity. I felt better off gluten, but really didn't feel great until I got off the casein too.

Have you thought about using enterolab? You can be tested there with a stool sample, and they can also check for other food intolerances as well to common foods that people have issues with, like soy. I had the complete gluten panel done, which included the casein screen. I think I might go back and have the other ones tested too, since I'm finding issues with, I think soy.

If you don't want to go that route, I'd try to eat a diet that was paleo-like, fruit, veggies, meat and fish. Eliminate all the foods people seem to have problems with, like corn, wheat, soy, nuts, dairy, legumes. See if you improve after a couple weeks of that, if so, try slowly adding back foods, one at a time and see if you react. Food journal is very helpful.

[cshinaberry19]

Thanks to everyone for the replies! Some responses:

Eek! CVID is common variable immune deficiency, right? Sorry for the blunt language, but that sucks! That means you get all the fun blood plasma product medications, right? IVIG? Good thing students need money so badly that they'll sell their bodily fluids

ChelsE: Yes, CVID = common variable immunodeficiency. When I was at university I used to walk everyday past a plasma donation clinic, and the only people who you ever saw going in and out were hung over students looking for cash for beer or homeless folks! Imagine my horror when the doc said "IVIG replacement!" But I don't want their stuff! Honestly! Seriously, though, part of the reason my CVID is still such a big issue is that I didn't tolerate the IVIG therapy - I developed aseptic meningitis as a reaction and was very ill for quite a while afterwards. It's possible to deliver the Ig subcutaneously (which generally carries a lower risk of side effects), but my immunologist has been waiting until I was a bit stronger and more recovered from the previous attempts before we tried again. Lucky me, huh?

Probably the last thing in the world you want to do is give up more food but you might be like me and also have dairy problems...Have you thought about using enterolab?

Nancym: Well, as I said I've been a vegan for years, which means I don't eat dairy, eggs, meat, or animal products of any kind. That was true even long before the gluten-free diet, and I haven't changed anything in that regard, nor would I be really willing to since my choice is for philosophical reasons. I'm also not kidding when I say all I've been eating is brown rice and vegetables! So I would think that unless I'm allergic to either of those, that I would also be testing for other food allergies like corn and soy, which I haven't had since I started eating gluten-free. I would be interested to try the Enterolab procedure - I've read a lot about it.

Matilda, jenvan, dionnek, and everyone else - thanks for the pep talk and advice, truly appreciated!

[Iron Jack Kidd]

Hi cshinaberry19,

It sounds like you received several good responses here. One mentioned here that worked for me was keeping a detailed food journal, containing everything you have eaten and how you feel that day.

Two things you might try if you haven't done them yet;

1) try eliminating additional food types, potatoes for me have a disturbing similar effect like eating glutens, for a min of 15 days, then readding them.

2) try taking a full 96 food allergy test, a vegan friend of mine found out after doing this she was eating a bunch of foods she was allergic to; soy, legumes, etc... This was just adding to her problems.

Unfortunately if you do take the Endoscope procedure (Upper UI Endoscopy); you will have to eat gluten for seven days prior to the procedure...

Take care,

-Iron Jack Kidd

[penguin]

Unfortunately if you do take the Endoscope procedure (Upper UI Endoscopy); you will have to eat gluten for seven days prior to the procedure...

Not true, to have an endoscopy you have to be eating A LOT of gluten (at least the equivalent of 4 slices of bread a day) for 3-6 months for damage to show. That was in Dr. Greene's book, I think.

[Iron Jack Kidd]

I had an Upper UI Endoscopy preformed. My doctor told me to eat glutens for the seven days prior to testing.

I just re-read this post I do not know anything about the “the Enterolab procedure” which I had assumed was the Endoscope.

[evie]

schina; My GI told me that I would feel worse before i would feel better, he was right!! At that time i had not had the pins & needles in my arms & legs yet, I lost more weight & got so weak I could hardly walk. I have been on the gluten free diet for a bit over 4 months now and until a week ago was feeling better. Now I am having stomach aches again, got spoiled so do not like that. It may be part of the heeling process or maybe I have accumulated more food allergies. I have learned form others on here that this can happen. I have gained a few lbs back so must have had a bit of intestine healing, YEAH!! Also have gained some strength back,<>.

Welcome to this board; if you hang in you will learn a lot, most people here have a lot of patience & are good @ researching Celiac disease. I have learned lot from them. Best of luck to you. evie

[penguin]

I had an Upper UI Endoscopy preformed. My doctor told me to eat glutens for the seven days prior to testing.

I just re-read this post I do not know anything about the “the Enterolab procedure” which I had assumed was the Endoscope.

Enterolab is a lab that does stool testing for gluten antibodies and malabsorption, among other things. That test is much more sensitive than blood tests, and can be done after being gluten-free a while.

With the Upper GI Endoscopy you had, your doctor was misinformed. It takes a good period of time (certainly more than a week) for damage to show in the villi. That's why the current reccommendation is 4 slices of bread a day for 3-6 months.

[cshinaberry19]

2) try taking a full 96 food allergy test, a vegan friend of mine found out after doing this she was eating a bunch of foods she was allergic to; soy, legumes, etc... This was just adding to her problems.

Thanks for the input, Iron Jack. Weirdly enough, one of the additional side effects of the CVID is that allergy tests don't work. The lack of immunoglobulin in my body (and I have a very profound lack) interferes with the pathway that registers allergic response. One of the things that led them down the path that eventually diagnosed me with the CVID was that I had a full skin test done and didn't respond to things I had been proven (by skin test) allergic to in the past. My immunologist is a bit puzzled since he thinks I shouldn't be having allergic reactions AT ALL, but clearly I'm still having the same responses to pet hair, pollen, etc that I've always had. So I guess it's possible I could have developed food allergies, but I'm not sure conventional testing would pick them up.

This being the case, would the EnteroLab testing still work, I wonder?

[penguin]

This being the case, would the EnteroLab testing still work, I wonder?

Hmm. Enterolab tests for IgA antibodies, which is a problem for you, BUT they also test for malabsorbtion. If you have celiac, you probably have some degree of malabsorbtion. It also tests for the genes for celiac and gluten intolerance, so it may very well be worthwhile for you.

[colorado]

I've been on a gluten-free regimen for over 3 weeks now and I am seeing ZERO change in my symptoms. It seems from what I have read on this forum and elsewhere that many, many people see some improvement almost immediately, or at least within a few days. Suffice it to say I'm feeling a little skeptical at this point.

I feel I can say with almost 100% certainty that I'm not getting hidden gluten. I didn't enter into this trial lightly... I spent a lot of time reading up on it as far as what I could and couldn't have. Before I started the diet, my husband (who's doing it with me for moral support) and I got rid of all the gluten-containing food in our kitchen. We boxed up and quarantined all plastic and wooden utensils and replaced it with brand new. We vacuumed out the cabinets, scrubbed out the fridge, scrubbed all the counters, replaced all the sponges... I bought gluten-free soap, shampoo, toothpaste, etc. I checked out all the medications I take and confirmed that they are all gluten-free. I bought gluten-free vitamins and supplements. I haven't eaten a single meal outside the house since I started the diet and I haven't eaten ANY prepared food. NO glutened food has come in this house since I started. I decided that whole foods were the way to go to minimize the chances of CC and hidden gluten, so pretty much all I've been eating is brown rice and vegetables, either fresh or frozen (the latter are just plain frozen veg - no manufacturer-added sauces or spices). I have been using some spices on what I eat, but we had ground them ourselves so I know they don't have any gluten added. I was a dietary vegan before starting the gluten-free diet, so I'm not eating any dairy - I know lactose intolerance is a big problem.

Any suggestions? I have some other health problems (mainly severe CVID) that could be causing my GI symptoms - I am just trying to rule out celiac. I know it can take many, many months for complete healing to occur, but I am thinking I should start feeling better long before then if the gluten-free diet is having an effect. So how long, from everyone's experience, should I give it before I assume that the problems I'm having are NOT because of celiac?

I cross-posted this to a couple different forums, so if you're seeing this more than once, I apologize!

It's been years since you posted this, but I was hoping you'd come back with an update. I have CVID as well . I had the scopes done and samples taken and they claimed celiac disease. I changed my diet and zero improvement for over a year, in fact I got worse.

In that time I researched and found us CVID patients typically have something that even under the microscope looks EXACTLY like celiac disease but it is not. It's not because it has nothing to do with gluten.

If you haven't made a lot of progress talk to your doctors ASAP.